Whether you’re new to caregiving or a veteran, there are still things to learn about the US healthcare system. This series of videos from Alz Live provides a roadmap. This is part eight of an eight part series.
If you are starting to think that optimal caregiving at home is more than you can manage on your own, you could be right.
The going is, well, going to get rough. Here is who to reach out to.
With a Little Help
For the millions of family caregivers of people who are living with Alzheimer’s, there comes a time when love, dedication, and basic skills can no longer match their loved one’s needs.
Perhaps his or her schedule doesn’t have the flexibility to incorporate the many hours of care required every day of every week. Perhaps greater expertise is needed. At this juncture, many caregivers turn to home care providers to fill the gaps.
“Family caregivers typically contact an agency because of caregiver burnout or scheduling difficulties,” says Lily Sarafan, president and COO of Home Care Assistance (HCA), which provides non-medical in-home care to seniors across the United States and Canada. “It’s a very physically and emotionally demanding job, and they shouldn’t feel guilty about seeking outside help.”
When you think about optimal caregiving, it’s important to bear in mind that it’s about more that the burden or the cost. Start thinking about it as a paradigm shift, advises Sarafan. The goal is to help your loved one thrive in the place they want to be the most — at home.
The greatest advantage of home health care for anyone with dementia is familiarity of surroundings. In a world already threatened by confusion, the disruption of a move can be unsettling.
Non-medical home care services — whether obtained through an agency or independently — help with activities of daily living such as dressing, bathing, or toileting. Or, they might provide a loved one who is still somewhat independent assistance with activities such as meal preparation, housework, shopping or medication management.
The Opposite of Giving Up
Most people aren’t trained as nurses, or social workers, or dementia experts, and as the disease progresses, they find themselves under increasing stress.
Many caregivers “think there’s something wrong because they can’t manage it all themselves,” Sarafan says. “But they need to know they can be a better daughter, or son, or spouse, or family member, or friend when they’re not exhausted and overwhelmed. That way they can spend more quality time with their loved one.”
Family caregivers need the most help with personal care tasks, which is not typically covered by private health insurance programs or Medicare, according to the Caregiver Action Network. So unless your loved one purchased long-term care insurance prior to diagnosis, help will be limited by what you can afford.
Some “dual eligibles” (those who receive both Medicare and Medicaid) may qualify for limited state or federal assistance. However, most costs for non-skilled care will come out of pocket.
Medicare only pays for home health care services if the person requires intermittent skilled nursing care, physical, occupational or speech therapy, is considered homebound, and is under a physician’s care. Services must be ordered by a physician and are paid for by “episode” of care — up to 60 days maximum, depending on care required.
If your choices appear to be either becoming a full-time caregiver yourself or placing your loved one in a residential care facility, you might want to consider the third option of in-home care.
“It honors the patient’s wishes to stay at home through end of life and allows the caregiver to live his or her own life,” Sarafan explains.
Give Me a Break
Another option is respite care. This can give you a short-term break, while your loved one receives appropriate care in a safe and supervised environment. “Using respite services can support and strengthen your ability to be a caregiver,” according to the Alzheimer’s Association of America.
Family, friends, volunteers or paid caregivers can provide respite care at home, or you might opt for an adult day care or residential facility with professional staff. Day care encompasses planned activities like games, music or art and often includes meals. Some centers provide transportation services.
Residential facilities provide longer term respite care – a few days to a few weeks. It can allow you time for a much-needed vacation, to attend an out of town event or meeting, or to just enjoy some downtime to recharge your batteries. Cost varies, and is usually paid out of pocket.
When evaluating respite facilities, look for one with a memory care unit and whose staff are trained to care for those with Alzheimer’s and dementia, advises Carol Levine, Director of the United Hospital Fund’s Families and Health Care Project. “Make sure the people are really skilled in providing appropriate care.”
Certification and training are key when evaluating home care agencies, says Barbara Glickstein, a New York public health nurse who helps care for her 90-year-old mother. Ask whether caregivers receive continuing education, including behavioral health, and are familiar with handling a range of emotions and situations.
“Those with Alzheimer’s require a different level of care than those without the disease. It’s important that caregivers — whoever they are — understand these differences and how to relate to them,” she says.
6 Questions to Ask an Agency
First, make sure you’re dealing with a reputable organization, then ask:
Who are their community and professional partners?
Are caregivers licensed and is the agency Medicare certified? That means they meet minimum federal standards for patient care and management.
Are their caregivers employees or contractors? Caregivers can almost never be contractors for an agency, says Sarafin, so if that’s their setup, it’s likely they’re cutting corners elsewhere, perhaps on training, support, or quality.
Ask about caregiver training — is dementia-specific training provided? Caregivers should have this skill set as well as the emotional wherewithal to care for somne with Alzheimer’s.
What are the agency’s professional processes – such as quality assurance, continuing education and customer satisfaction?
Will your calls be answered 24/7? You need to know that if issues arise after hours or on the weekend, someone can respond.
Don’t base your decision on cost alone. An agency that’s a dollar an hour less than another may wind up costing more in the long run if you have to miss work because the caregiver doesn’t arrive or have backups in place in case of emergency.
Also make sure you understand exactly what services agency will and won’t provide according to state law. While families can provide any care for a family member, professionals must abide by state law.
And of course, get a list of references and find out how they conduct their screening and background checks.
“Be diligent and vigilant just like you would be with any other health care decision,” says Sarafan. Don’t get locked into a long-term contract, she advises. If you’re not happy with the provider you could be on the hook for thousands of dollars.
There are numerous community-based services and programs that can provide assistance with finding an agency or service, respite care, or just give you a needed break from caregiving duties.
Medicare.gov – provides information about Medicare-certified agencies in your geographic area, including Home Health Compare, which allows you to compare the home health care agencies in your area. Call 800-MEDICARE for more information.
Eldercare Locator can help you find the services you need in your area by calling 1-800-677-1116.
Whether you’re new to caregiving or a veteran, there are still things to learn about the US healthcare system. This series of videos from Alz Live provides a roadmap. This is part seven of an eight part series.
You’ll notice issues with communication, difficulty with balance or walking, or problems with routine tasks like getting dressed or eating.
Medicare and most private insurance reimburse for therapy services. Don’t hesitate to discuss the need for services with your loved one’s primary care provider.
Go to the Experts
Therapists bring a unique perspective to caring for a person with Alzheimer’s. Their focus will be on optimizing the living environment and communication processes.
“It’s not like rehab where the goal is to help recover function,” says Catherine Piersol, Ph.D., OTR/L, Associate Professor, Department of Occupational Therapy at Thomas Jefferson University in Philadelphia. “We focus less on what a person cannot do but rather what they can do.”
Environmental issues like cluttered living space can impact behavior, Piersol explains. Clutter is distracting and unsettling and can lead to a lot of the agitated behavior seen in some people with Alzheimer’s. Occupational therapists do a lot of caregiver education about improving processes to make daily life safer and easier, such as installing bed rails, shower grab bars, removing throw rugs and teaching proper transfers in and out of wheelchairs.
Elizabeth Oloo, a Human Resources Manager in Washington, D.C., says she learned a number of enormously helpful lessons from the occupational therapists who helped her mother. Among them were how to make her home safer, how to effectively move her mother from the bed to a chair, and how to help her bathe and dress.
“They were wonderful and very encouraging and patient,” she said. “The OTs also matched their approach to her mental status and ability on the days they came to our home. If she was a little more confused or agitated, they handled her in an incredible way and worked with her to keep her calm and focused.”
Working with What Works
“Our process is to educate the family to relax the rules. We help figure out what will work for them, and develop new routine that is easier to follow,” says Piersol, who is also the Clinical Director of the Jefferson Elder Care program.
They help caregivers learn to “reframe,” something she calls errorless learning. Nothing is wrong.
“For example, if mom thinks it’s Thursday but it’s Monday, it’s not that big a deal,” she says. “We teach the caregiver to understand it’s not about being right, it’s all about engagement.” Many families say they want their loved one to feel as independent as possible, so they tend to correct rather than just roll with it. Relish the interactions you have, she advises.
While many people with Alzheimer’s and other dementias are capable of walking in the later stages of the disease, they often have balance and coordination problems, which lead to falls.
A physical therapist (PT) can train the muscles to “learn” to respond to changes in the environment, such as uneven or unstable surfaces, according to the American Physical Therapy Association. PTs also teach family members how to safely move, lift, or transfer the person with Alzheimer’s disease to prevent injury to the caregiver as well as the person being cared for and how to use adaptive equipment and devices.
Physical therapy can provide a person with an activity that he or she can perform successfully and it can help to improve breathing, mobility, and endurance. Exercise has been shown to help reduce the restlessness and wandering common in many people with Alzheimer’s and other dementias.
Communication is an area that often leads to frustration and anger for both caregiver and loved one.
“Caregivers need to reduce the complexity of the communication because the person with the disease can’t process it. We help them change the communication approach, like counting to five before repeating a question,” Piersol says. “It’s how you say it and then giving the person time to respond.”
Speech-language pathologists (SLP) are experts in helping the person with dementia preserve communication and can train family members to improve the processes. If the person has trouble swallowing, an SLP can teach compensatory strategies or help alter the diet so he or she can eat without risk of choking.
Here are some helpful communication strategies for caregivers from the American Speech, Language and Hearing Association:
Repeat key information to help maintain focus
Give choices rather than asking open-ended questions (“Would you like coffee or tea?” instead of “What do you want to drink?”)
Keep information and questions short and simple
Use written cues for activities (such as how to get dressed)
Use “memory books” to help the person recall personal information
“This is a very challenging disease,” Oloo says. “But having the therapist at home really helped my mother function the best she could and helped my family cope with this struggle.”
Talking the Talk
Speech-language pathologists can help caregivers deal with common communication issues. They include:
Difficulty finding the right words
Repeating the same words or phrases again and again
Substituting words that sound similar
Inventing new words to describe familiar objects
Easily losing train of thought
Difficulty organizing words logically
Reverting to speaking in a native language
Using curse words (a strange quirk of diseases that sap language skills)
Speaking less often, or even not at all
Relying more on nonverbal gestures to compensate
Having trouble understanding conversation, questions and instructions
Make Use of the Help at Hand
Medicare and most private insurance reimburse for therapy services received in home or in a facility. Don’t hesitate to discuss the need for services with your loved one’s primary care provider if you begin to notice issues with communication, difficulty with balance or walking, or problems with routine tasks like getting dressed or eating.
Whether you’re new to caregiving or a veteran, there are still things to learn about the US healthcare system. This series of videos from Alz Live provides a roadmap. This is part six of an eight part series.
Nurse Practitioners and Physician Assistants, alternatives to doctors, help ensure that patients have timely access to quality health care.
Great Players to Have in Your Court
Like many caregivers, you may regularly interact with a Nurse Practitioner or Physician Assistant on your loved one’s care team, rather than the primary care physician. That can be a good thing.
“Many caregivers are happy to talk to advance practice nurses about issues they aren’t necessarily comfortable talking to the physician about,” says Elizabeth Capezuti, Ph.D., R.N., F.A.A.N.
It’s an observation based on considerable expertise. Capezuti is the William Randolph Hearst Foundation Chair in Gerontology and Professor at the Hunter-Bellevue School of Nursing in New York City. She hears many versions of the same story.
“My mother’s internist didn’t really have time for her and he didn’t take a holistic approach to her Alzheimer’s diagnosis,” said Barbara Glickstein, who helped her mother, then in her late 80s and living in Florida, find a Nurse Practitioner.
It took some time, but they eventually connected with the only registered NP in the area — a 40-minute drive away. “Mom really liked her. She was very available for things that required clinical skills and primary care knowledge and, because of her nursing training, she could also address the psychosocial needs, that may or may not may be medically serious but still a concern to Mom.”
What Are They?
A Nurse Practitioner is a registered nurse (RN) with advanced education and clinical training who provides an array of health care, including the diagnosis and management of common as well as complex medical conditions.
NPs specialize in specific areas of care like gerontology or women’s health and work independently or in collaboration with a physician practice, depending on individual state regulations. With training focused on the medical/nursing model, NPs bring a comprehensive perspective to health care. According to the American Academy of Nurse Practitioners, what sets NPs apart from other health care providers is “their unique emphasis on the health and well-being of the whole person.”
It makes sense for caregivers and those with Alzheimer’s to rely on nurse practitioners for routine care in many situations, Capuzeti says. “We’re talking about the type of patients that need lots of supportive care in terms of how to do the day-to-day, the functional things, as well as the medical primary care.”
Physician Assistants, or PAs, also provide routine care — they perform physical exams, diagnose and treat illnesses, order and interpret labs, imaging and other diagnostic tests, counsel patients about wellness and preventive health care, assist in surgery, and prescribe medications. They follow a medical/physician model of care, focusing mostly on disease diagnosis, treatment and management. PAs practice under physician supervision, although task delegation can be very broad, depending upon specific state regulations.
The influx of people into the health system from the Affordable Care Act, and the wave of aging baby boomers who need geriatric care, mean “physicians are learning new ways to work with patients and caregivers in the office setting,” says said Peter DeGolia, M.D., Professor of Family Medicine at Case Western Reserve School of Medicine in Cleveland, OH. “There are changes occurring on the provider side; many for the better.”
Having an NP or PA in the practice can foster better communication and help make sure little things don’t fall through the cracks because the physician is rushed.
Reasons for the Need
At least 55 million people in the United States live in areas with severe physician shortages, according to the Health Resources and Services Administration.
Nurse Practitioners and Physician Assistants can help to fill that void to ensure that patients have timely access to quality health care. Using the services of an NP or PA for routine care can mean faster appointment scheduling and less time in the waiting room; for those in rural areas, it may help to avoid having to drive long distances to get their loved one quality, routine care. You may also encounter these health professionals in skilled nursing facilities or in home care settings.
“There are people who say, I only want to see my Nurse Practitioner, and there are other people who say, ‘I’m not paying to see a Nurse Practitioner, I want to see a doctor.’ But I think that you should be open to the person that you can have the most useful conversation with,” says patient advocate and author Trisha Torrey. She finds that because of their training, “nurses listen differently.”
Glickstein said her mother’s NP was an excellent all-round communicator. “She worked with me by email long distance. I could ask a question in the morning and I’d get a reply by lunchtime.” More importantly, her mother felt that her physical and psychosocial health care needs were met. “I got the sense that she didn’t feel invisible. It was a whole different experience for her.”
USAgainstAlzheimers, or USA2, is a national organization that engages in “public advocacy, federal relations, grassroots activity and voter relations” on behalf of those with AD and their caregivers. http://www.usagainstalzheimers.org/
New York University’s Fisher Center for Alzheimer’s Research Foundation has a free monthly newsletter at www.alzinfo.org. This NYU site also has a link to “Clinical Stages of Alzheimer’s” — a comprehensive timeline to alert caregivers about what to expect as their loved one declines through the early, moderate, and severe stages of AD.
A website coordinated by Cornell Medical College to help caregivers prepare a safe home environment for someone with Alzheimer’s can be found at www.ThisCaringHome.org.
Liz Seegert is an independent health journalist who covers aging and related issues. Follow Liz on Twitter and see more of her work at lizseegert.com.
Whether you’re new to caregiving or a veteran, there are still things to learn about the US healthcare system. This series of videos from Alz Live provides a roadmap. This is part five of an eight part series.
Helping caregivers and families improve interaction with their loved one is the job of an emerging new field of care managers, dementia coaches and patient advocates.
They are valuable team players. You don’t have to carry the entire game on your shoulders.
Going to the Bullpen
Did you know that caregivers have their own versions of relief pitchers? They go by different names, but these champions can guide you along your caregiving journey, help you through the toughest innings and lift some of the burden.
“Advocates help empower patients and caregivers to take more control over managing the disease, set goals, stay safe in the healthcare environment and be a real part of the care team,” says professional advocate and author Trisha Torrey.
Professional patient advocates, many with nursing or social work backgrounds, ensure your loved one’s voice is heard and are there to help you make more informed medical decisions.
According to the Professional Patient Advocate Institute in Gaithersburg, MD, advocates tackle tasks like accompanying your loved one to medical appointments, negotiating with insurers, handling medical bills and paperwork, or doing research to help you better understand treatment and service options.
Money Well Spent
Patient advocates operate outside of the existing insurance reimbursement system, so you’ll pay out of pocket for their services. Yet, Torrey says, many caregivers find that it’s well worth the expense to have a knowledgable, proactive professional speak up, ask questions, resolve issues and reduce some of the day-to-day stress.
Patient navigators guide you and your loved one along the continuum of care, resolve barriers to that care and help to make each step as smooth and seamless as possible, according to Harold P. Freeman, M.D., founder and president of the Harold P. Freeman Patient Navigation Institute in New York City.
Dr. Freeman, Professor Emeritus at Columbia University College of Physicians and Surgeons, pioneered the concept of patient navigation to help low-income patients navigate the health system.
“Navigators work to connect the myriad specialists within the varied systems of care, such as primary care sites and tertiary care sites, so that each can do their job most efficiently,” he wrote.
Even those with health backgrounds need guidance when it comes to their own loved ones.
Barbara Glickstein, R.N., M.P.H., relied on the advice of several geriatric social workers before moving her mother from Florida back to New York.
“As a nurse, I spent a considerable amount of investigative research time talking to geriatric social workers, who were in my own professional circle, and I called some in Florida where my parents still held a residence, to see whether getting around the clock care for my mother — which would be required given her memory problems, and for safety — was a good decision knowing that all of her children live out of state.”
The social workers pointed out the difficulty of coordinating shift-based care from 1,500 miles away and helped Glickstein think through issues like her mother’s quality of life within various care settings.
A social worker’s main priority is maintaining and enhancing quality of life for the older adult and ensuring optimal functioning in the least restrictive environment.
They can connect you and your loved one with various public and private programs. A social worker can help you apply for appropriate services and cut through red tape, assist with forms like advance directives and be a valuable resource to support caregivers.
You may encounter a geriatric social worker within the hospital, skilled nursing facility, home care, assisted living facility or through a community-based service organization.
Managing Geriatric Care
A geriatric care manager will assess a client’s clinical and social service needs, arrange services, and provide ongoing care monitoring. The care manager coordinates assistance from paid service providers, as well as from family and friends, in order to enable a person to live as independently as possible.
Most institutional care managers are licensed social workers or nurses. However, private care management is still a relatively new field and is unregulated in many states, according to the AARP Public Policy Institute.
Jennifer Zajaick, who lives in Wisconsin, says hiring a care manager to help her parents in Florida was priceless. “This person is helping us put the plan together, get us connected with the resources, help us maneuver through insurance, Medicare, helping us with paperwork, helping us find respite.”
It’s important to find a “good fit,” and one who understands and respects your loved one’s goals, she says. “They’re out there and it can take away all the questions of what to do and how to plan.”
The Pro in Your Corner
“What dementia coaches do is try to help caregivers really focus on the issue at hand and not become overwhelmed by everything else because … you feel that you’re now responsible for somebody else’s life,” says Kerry Mills, a dementia coach from Westchester, N.Y.
“We teach families as well as paid care partners or volunteer care partners what is going on with the person who has dementia, what’s going on in their brain, what’s the disease, what’s not,” Mills explained. “This awareness helps family members avoid becoming defensive and judgmental, and not feel that they have to correct every single thing once they start to understand that the brain is just breaking down.”
This awareness helps family members avoid becoming defensive and judgmental.
Coaches also help caregivers better handle these changes by learning different ways to respond and approach their loved one.
“The main philosophy of a dementia coach is that we plan for tomorrow, but we live for today,” she says. “It avoids having people live with the stress of what could happen with the disease; rather, let’s live for what’s happening with your loved one today. So what do we need to do just a little bit differently?”
Mills says coaches differ from other care advocates because “it’s not about me going and doing it for people. It’s about helping them become the care partner that they want to be, to have the satisfaction of doing a great job in that role.”
Caring from A Distance is a website dedicated to the needs of long-distance caregivers for many health conditions, not just Alzheimer’s. It helps connect some of the estimated 6.9 million far-off caregivers with local resources, support services, counseling, a library on issues ranging from financial planning to end of life care, and an online “Family folder” where you can securely store all important information in one place and access from any computer.
Arch National Respite Network the ABCs of Respite Care for Consumers – offers a free downloadable guide for family caregivers on choosing a program or provider, how to pay for care, and other key concerns. Caregivers can also use this website to find a respite program in their area.
National Transitions on Care Coalition: NTOCC has developed information to help patients and their caregivers better understand issues associated with transitioning from one health care setting to another and tools to help consumers as they navigate transitions.
Liz Seegert is an independent health journalist who covers aging and related issues. Follow Liz on Twitter and see more of her work at lizseegert.com.
Whether you’re new to caregiving or a veteran, there are still things to learn about the US healthcare system. This series of videos from Alz Live provides a roadmap. This is part four of an eight part series.
Throughout your caregiving experience, you will interact with many members of your loved one’s care team.
They might be clinicians, such as neurologists, geriatric psychologists or nurse-practitioners. Or, they might serve a support role, as social workers or geriatric care managers. Confused about who does what and why? Read on.
Geriatrician: Geriatricians are medical doctors certified in either family or internal medicine who have additional training in treating, diagnosing and preventing disease among those over age 65. You may want to seek one out if your loved one’s primary practitioner does not specialize in the health of older adults.
Why: Nine out of 10 adults age 75 and older have at least one chronic illness, and about 1 in 5 have five or more chronic conditions, according to AARP. In addition to Alzheimer’s, your loved one may be battling heart disease, Parkinson’s disease, diabetes, or other conditions which require ongoing care and monitoring. The geriatrician is the “point person” who manages your loved one’s overall health and coordinates care provided by other care team members. Geriatricians help you and your loved one evaluate goals of care and develop a care plan that encompasses the things that matter most to the individual.
It’s important for the family caregiver to help the geriatrician stay on top of health issues — but communication may not always be optimal, said Mara Botonis, of Ft. Myers, FL, a family caregiver and author of When Caring Takes Courage. Use a checklist or keep a log to monitor medical and behavior issues; review it regularly with the provider to identify areas of concern.
Neurologist: A neurologist is a medical doctor trained to diagnose and treat disorders of the central nervous system, including the brain. He or she may help the primary physician diagnose Alzheimer’s or other dementias through an examination of the nervous system and brain functioning. Neurologists may perform diagnostic tests such as CAT scans, MRIs, or spinal taps.
Why: A referral by the primary care provider is common if Alzheimer’s or other dementia is suspected. The neurologist will take complete medical and psychological history and perform a variety of physical, cognitive and lab tests to pinpoint probable Alzheimer’s – such as testing motor skills and cranial nerves, and conducting a standardized a mental status evaluation. Neurologists can diagnose the likelihood of Alzheimer’s with about 90 percent accuracy by eliminating other conditions, say experts at the University of Miami. However, the only way to actually confirm that diagnosis is through autopsy.
Geriatric Psychiatrist: Geriatric psychiatrists are trained to treat patients with AD and to counsel caregivers. They perform clinical assessments, provide comprehensive behavioral treatment and management, advise and educate individuals about mental health issues of older adults. Geriatric psychiatrists also help family members cope with the psychological toll of caregiving.
Why: Behavioral problems become more common as the disease progresses, according to the Geriatric Mental Health Foundation. These symptoms may be the result of a treatable problem such as pain, infection, or discomfort and managed through non-pharmacological and pharmacological approaches. The primary goals of treatment are to improve the quality of life of the patient and caregiver and to maximize function by enhancing cognition, mood and behavior.
Nurse Practitioner and Geriatric Nurse: A nurse practitioner (NP) is a registered nurse with advanced education and training in the diagnosis and management of common medical conditions, including chronic illnesses. Nurse practitioners provide a wide range of health care services — including some of the same care provided by MDs — and maintain close working relationships with physicians. An NP may serve as someone’s regular health care provider, although regulations and “scope of practice” vary by state. The Family Caregiver Alliance calls the role of nurse practitioners “pivotal” in early diagnosis of Alzheimer’s and in managing disease progression.
Geriatric nurses care for the elderly, focusing on creating and carrying out treatment plans for chronic illnesses, including diabetes, hypertension and respiratory disorders. They also educate and counsel families of elderly patients who suffer from acute and chronic conditions.
Why: Nurse practitioners are part of many medical practices, hospitals, and clinics and may treat your loved one for routine care. “Many people believe nurse practitioners are better listeners and often have more time to spend answering questions and offering support.” said Susan Reinhard, Ph.D., R.N., Director of AARP’s Public Policy Institute. Nurses can talk about the day-to-day topics that they weren’t always comfortable talking to the physician about, like “how do I get him to the bathroom? How do I prevent those falls at night?” explained Liz Capuzeti, Ph.D., R.N., Hearst Foundation Chair in Gerontology at Hunter-Bellevue School of Nursing, City University of New York.
Therapist: Physical therapists apply research and proven techniques to help people get back in motion. Occupational therapists evaluate a person’s ability to carry out daily tasks and can individuals to function more independently.
Why: Regular exercise is important for both for overall health and to address issues specific to Alzheimer’s, says The Fisher Center for Alzheimer’s Research at The Rockefeller University in New York. Studies show that light exercise and walking appear to reduce wandering, aggression and agitation in people with Alzheimer’s. Incorporating exercise into daily routines and scheduled activities can also help alleviate problem behaviors.
Physical therapists will assess your loved one’s ability to walk safely, the risk of falls, and other functional tasks. The therapist will develop a treatment program, including exercise, to help maintain your loved one’s current abilities, which also helps reduce caregiver burden.
Occupational therapy for people with Alzheimer’s and other dementias combine environmental modification, adaptive aids, problem-solving strategies, skill training and caregiver education and training. They help your loved one achieve maximum independence and enhance daily living activities.
Geriatric Social Worker: These experts are trained to work with older adults and provide supports for family caregivers. Geriatric social workers “address the specific challenges of the aging process by promoting independence, autonomy, and dignity in later life,” according to the National Association of Social Workers.
Why: You may work with social workers in hospitals, rehab facilities, at home or through an insurance company. They are your liaison between the care team and family – providing medical case management, tackling barriers to service, fostering collaboration and coordination among professionals, and addressing gaps in care.
Care Manager: Care managers act as family guides and advocates. They often have backgrounds in nursing, social work or psychology. They assist with many facets of care, including medical services, provider-caregiver communication, bill paying or navigating programs like Medicare and Medicaid.
Why: If you’re a long-distance caregiver, or just simply overwhelmed with what you need to do, a care manager can ease some of the stress and burden by taking over some of these time-consuming, complex responsibilities.
Area Agencies on Aging Finder
Area Agencies on Aging (AAA) are offices established through the Older Americans Act that serve to facilitate and support the development of programs to address the needs of older adults in a defined geographic region and support investment in their talents and interests.
Geriatric Mental Health Foundation
Caring for the Alzheimer’s Disease Patient: How You Can Provide the Best Care and Maintain Your Own Well-being (downloadable pdf also available in Spanish)
Whether you’re new to caregiving or a veteran, there are still things to learn about the US healthcare system. This series of videos from Alz Live provides a roadmap. This is part three of an eight part series.
Once you and your loved one have absorbed the reality of the Alzheimer’s diagnosis, it’s time to think about the practical matters of caregiving and daily life.
While changes may be subtle at first, the truth is that learning to cope with a continually shifting “new normal” can be daunting. This article documents all the early steps you can take – and decisions to consider – to make the transition as smooth as possible.
Resource: eCareDiary: manage appointments, track medications and get reminders, organize important documents, coordinate care among family members
“The change is always in us,” says Kerry Mills, nationally recognized dementia coach and author of I Care: A Handbook for Care Partners of People with Dementia. “We can’t change a person with dementia, so we will always have to change ourselves to be able to see a difference in the situation.”
Building Your Team
Ideally, you and your loved one have already had a lengthy discussion about what lies ahead. If you are not going to be the primary caregiver, whoever is taking on this responsibility should be included in meetings from as early a stage as possible. If the primary care provider is not a geriatric specialist, now may be the time to consider a switch, or add a geriatric behavioral psychologist to the team.
Specialists are often more current on new clinical studies and are experts in dealing with issues like agitation, sleep disturbances, paranoia and coping with impaired thoughts. Make sure to review any new medications or changes in medications with each practitioner.
Local support groups are very helpful. “Finding a good group that is just for spouses will help you find out the things doctors and other professionals don’t tell you,” says Allen Vann, whose wife Claire was diagnosed with early-onset Alzheimer’s eight years ago at age 63.
Partner with primary care provider to coordinate all facets of health care and manage medications. If the doctor or nurse practitioner is already part of a patient-centered medical home – a model of care where one provider is the point person to coordinate all other services: specialists, tests, medications or home care – then it will be easier for everyone to stay on top of changes in disease progression, medications or manage problems.
Finding a good group that is just for spouses will help you find out the things doctors and other professionals don’t tell you.
“Most older people are already juggling several chronic conditions, with multiple providers and multiple medications,” said Susan Reinhard, PhD, RN, Senior Vice President for Policy at the American Association of Retired Persons. “When you lay Alzheimer’s on top of that can it can be a real challenge to ensure that that people get the right care at the right time.”
Participating in a managed care network like the Kaiser Health System – Kaiser Permanente is a tightly integrated payment and health care delivery arrangement that offers high quality services at the lowest possible cost – may result in more seamless care coordination. All clinicians within the network have access to the person’s electronic medical records.
Check your loved one’s current health plan and consider alternatives during the open enrollment period if you’re not satisfied with the level of care coordination or communication among providers.
Then, of course… family. Gerry Polnivy, 86, relies on her daughter to help keep track of the many clinical appointments and medications for her husband, who is in the mild stage of the disease. “She keeps a calendar and writes all the appointments on it and when to give each medication,” she explains.
Polnivy’s husband sees a cardiologist, neurologist, and urologist in addition to regular visits to their primary physician. “I don’t know how I’d manage all of this without her help,” she says.
Get Organized, Stay Organized
Financial planning and health directives are critical issues that must be addressed shortly after diagnosis, say experts at the American Bar Association. Many families are unprepared for the consequences of this disease because of inadequate planning and poor communication among caregivers, loved ones and other family members.
Basic documents such as an advance directive should be updated and discussed with providers to ensure that medical decisions are carried out according to your loved one’s wishes.
Virtually everyone should create a financial power of attorney and a health directive, said Charles Sabatino, Director, ABA Commission on Law and Aging, American Bar Association. Although generic forms are available online, Sabatino says that they usually only cover 75 to 80 percent of what’s needed.
“Spending time with an attorney who specializes in eldercare addresses issues that you may not have even thought about, like protecting assets, creating trusts and avoiding potential abuse or exploitation.”
An advance directive is the most important health document to draw up immediately.
An advance directive is the most important health document to draw up immediately. This allows your loved one to name a designated health agent. The primary provider, adult children, and other caregivers should be told of the provisions.
Some providers may refuse to share health information, citing HIPAA (Health Insurance Portability and Accountability Act) privacy rules. This is a federal law that sets rules for health care providers and health insurance companies about who can look at and receive a person’s health information.
Or, they may insist on having the patient sign a proprietary waiver.
That’s just wrong, Sabatino advises. “It should be legally sufficient for anyone named in the advance directive, including other family members, to access and discuss health information with a provider.”
Laws vary by state so be sure to work with someone who is familiar with requirements where your loved one lives. Although the basic framework is similar in most states, many provisions are idiosyncratic, Sabatino says.
“And that’s, I think, the scariest part, because you’re responsible all of a sudden for this other person and paying the bills and making all these really big decisions that maybe you haven’t thought about before.”
“Many people are just not comfortable handling this; it can become overwhelming very quickly.”
Location, Location, Location
Wisconsin resident Jennifer Zaijaick was “constantly on the phone” long distance with her father’s physician in Florida. It’s been anything but an easy experience. “We’re working to find a respite facility here [in Wisconsin] that will help care for him, but it’s getting too complicated and his health has really declined,” she explained.
“It’s been a difficult journey finding the resources all the way around to help take care of him, and know what to expect.” She ultimately had to change jobs to free up more time to devote to caregiving.
The lesson here is that the reality of dealing with Alzheimer’s, and other forms of dementia, varies from state to state, and from city to city. This is simply a fact of American life, and is something that should be taken into account as you chart your course.
Talking the Talk
An important part of the caregiver’s journey is learning a new language. Here are some useful definitions:
Advance Directive is a document by which a person makes provision for health care in the event that, in the future, he or she becomes unable to make decisions. There are two types of advance directives – a living will and a health care proxy (also called durable medical power of attorney).
Living Will is a signed, witnessed (or notarized) document called a “declaration” or “directive.” Most declarations instruct an attending physician to withhold or withdraw medical interventions from its signer if he or she is in a terminal condition and unable to make decisions about medical treatment.
Health Care Proxy, sometimes called a “health care surrogate” or “durable medical power of attorney,” is a signed, witnessed (or notarized) document in which the signer designates an agent to make health care decisions if the signer is temporarily or permanently unable to make such decisions. Unlike most Living Wills, the Durable Medical Power of Attorney for Health Care does not require that the signer have a terminal condition. An agent must be chosen with great care since the agent will have great power and authority to make decisions about whether health care will be provided, withheld or withdrawn from the signer.
Palliative Care includes pain and symptom management and emotional and spiritual support when someone faces a chronic, debilitating or life-threatening illness. Palliative care specialists work with the person, the family and the care team to help improve quality of life during and after treatment for your specific medical concern. It is provided in tandem with life-prolonging therapies.
Research, Research, Research
Here are some examples of good places to turn for guidance.
The U.S. Living Will Registry electronically stores advance directives and makes them available to health care providers 24 hours/day via secure Internet or telephone-facsimile. The registry stores ALL types of advance directives: living wills, health care proxies, health care power of attorney, as well as organ donor information. Phone: 800-LIV-WILL (800-548-9455)
Liz Seegert is an independent health journalist who covers aging and related issues. Follow Liz on Twitter and see more of her work at lizseegert.com.
Whether you’re new to caregiving or a veteran, there are still things to learn about the US healthcare system. This series of videos from Alz Live provides a roadmap. This is part two of an eight part series.
Hearing the News
“What does that mean? “What do we do now?” are typical first thoughts, as is fear of the unknown, according to Chuck Fuschillo, Executive Director of the Alzheimer’s Foundation of America.
Reactions will range from surprise, denial, fear, helplessness, anger, or sad corroboration of declining function. Unfortunately, patients and caregivers can leave the physician’s office feeling adrift, without much tangible information to rely on.
Immediately following the news, it may be hard for people to take in any additional information anyway, because they are still trying to wrap their heads around the diagnosis, says Michelle Varegas, of the Family Caregiver Alliance, a non-profit advocacy group in San Francisco.
We had to research all of that on our own.
Depending on the provider, there may not be a lot of support available. “After that AD diagnosis, we weren’t given anything – no pamphlets, or handouts, or anything telling us what to expect,” explains Allen Vann, a retired middle school principal from Commack, NY.
His wife Claire was diagnosed eight years ago with early-onset Alzheimer’s. “There was no mention or discussion of support groups or websites or books. We had to research all of that on our own.” Vann eventually found a support group through the Long Island Alzheimer’s Foundation.
The good news: Eight years later, physicians are better trained in how to deal with the diagnosis and there are many, many sources of information available.
The New Normal
After the initial diagnosis, caregivers should make a follow-up appointment a week or two later to learn more about the disease, medical options, and social support. That allows them a brief time for the news to sink in and begin preparing for a new normal. Peter DeGolia, MD, Professor of Family Medicine, at Case Western Reserve School of Medicine in Cleveland, says he insists that AD patients always bring the family caregiver or other “reliable reporter” to future visits.
“It can be a delicate issue for some families,” he explains, “but having a caregiver present effectively assists the physician by providing more comprehensive information and means the caregiver and patient go home with a more accurate game plan.”
Even in the early stages of the disease, patients can forget what they’re told, so caregivers need to keep a spreadsheet or journal that both the family and provider can refer to.
Once a loved one is diagnosed, it’s up to family caregivers to become strong advocates on their behalf.
That may be difficult or uncomfortable at first, particularly for adult children. It can require a huge shift in attitude, says Jennifer Zaijack, of Wisconsin, who helps long distance with her father’s care. “You have to change how you work with your parents versus how you did before. It’s like a whole different way of interacting.”
Allen Vann believes that clinicians should not sugarcoat the nature of the disease.
Allen Vann believes that clinicians should not sugarcoat the nature of the disease. “They have to tell the spouse or caregiver what they need to know, not what they necessarily want to hear, so patients and caregivers know what to expect,” he explained. Many caregivers complain that they’re not given enough specifics about the disease’s progression and find themselves unprepared for issues like incontinence, agitation, wandering or hoarding.
That’s why it’s so important that caregivers feel empowered to ask questions, says DeGolia. “Write them down and expect them to be answered by the practitioner.”
While many physicians welcome questions – especially when caregivers come to follow-up appointments prepared – patients and caregivers of a certain generation or from certain cultures may still be uncomfortable with these interactions.
“We serve a lot of Latino clients who automatically defer to the concept that the doctor knows all,” said the Family Caregiver Alliance’s Varegas. “Many believe it’s a matter of respect – not questioning what this physician is saying and not asking any questions.”
“You have to be thinking of your loved one’s interests first and put yourself on the line a little bit,” says Carol Levine, who directs the United Hospital Fund of New York’s Families and Health Care Project, which focuses on developing partnerships between health care professionals and family caregivers. If you’re uncomfortable being assertive, ask another family member to step in, she suggests.
Clinicians can be very busy. But there’s no such thing as an inappropriate question, DeGolia emphasizes.
“Even if you have to stand between the provider and the door, don’t allow yourself to get brushed off if you’re not satisfied or don’t understand.”
Be a Squeaky Wheel
Caregivers should not be afraid to call the office between appointments, says DeGolia. It may be a nurse or nurse practitioner that responds, but the caregiver should feel empowered to call and communicate. “This results in two major benefits — the caregiver questions are answered and there’s a record of the call that the provider can refer to during the next visit.”
Providers also benefit from information a caregiver provides. It helps him or her better manage the person, especially knowing the response to medications, such as those prescribed to enhance quality of life for dementia patients. Caregivers should observe and write down any behavioral changes, whether positive or negative, – like agitation, confusion or nausea – and report them to the physician. “It’s also vital to inform the physician about medications and tests given by other providers,” DeGolia said.
Physicians are also learning new ways to work with patients and caregivers in the office setting. Some have practice facilitators that sit down with patients and caregivers to review the main concerns of the visit before seeing the clinician.
Most importantly, says DeGolia, “keep asking questions and don’t give up until you’re satisfied.”
What the Experts Advise
Schedule appointments for a time when the loved one is usually calm and has the most energy, when you are not distracted, or have other issues on your mind such as picking up a child from school or preparing for an important business meeting.
Keep a notebook or computerized spreadsheet to track visits, tests, medications, and comments. You don’t have to be especially health savvy or health literate — ask a provider or nurse for a list of medications and keep the printout.
Jot down issues about the medications, side effects, and behavioral or physical changes. It’s easy to forget details during consultations without notes.
Review your notebook before the office visit to make sure key issues are discussed.
Inform the physician about other medications, tests, or diagnoses given by other providers. Don’t assume clinicians automatically coordinate with each other or share results.
Any time the physician writes a prescription, ask what it’s for, what it does, and about potential side effects. Medical terminology can be complicated, so be sure to get an explanation in plain language if you don’t understand something.
Bring an audio recorder to the appointment and with the provider’s OK, record the discussion. Once you’re home, you can review information again or replay it for your family members.
Ask for recommendations for websites or books to help you better understand your concerns.
Save questions about billing and insurance issues for office staff; don’t waste limited time with the provider on issues that administrators can resolve.
The Caregiver’s Notebook
Much like the journals that interior designers ask clients to keep – a scrapbook of design articles, magazine photographs, fabric swatches, etc. that help clients describe what they want — caregivers should establish their own list of sites or articles or books they find helpful. Here are a few suggested sites with which to begin your list.
Caregiver Action Network
The Caregiver Action Network serves a broad spectrum of family caregivers including adult children caring for parents with Alzheimer’s disease. The site offers a list of resources, peer support and advice, and conducts advocacy work on behalf of family caregivers.
The US Administration on Aging offers this free public service to help connect people to services for older adults and their families. You can also reach Eldercare Locator at 1-800-677-1116.
My Medicare Matters
Medicare can be confusing. This free website provides step-by-step help to reassess coverage each year during open enrollment, and answer common questions about Medicare and Medicaid.
Whether you’re new to caregiving or a veteran, there are still things to learn about the Canadian healthcare system. This series of videos from Alz Live provides a roadmap. This is part eight of an eight part series.
Palliative care is often misunderstood as simply a way to manage the last weeks of life.
This evolving discipline, however, is much more than that. It’s a focused treatment offered by a specialized team: doctor, nurse, social worker, often working alongside pharmacists, nutritionists and counsellors.
The mandate of the team is broad – and includes helping caregivers contend with the emotional stress of a loved one’s illness – but pain management and symptom relief for the patient are priorities.
Why palliative care early
“Originally, palliative care focused entirely on the last weeks of life,” says Dr. Romayne Gallagher, Physician Program Director, Palliative Care Program at Providence Health in Vancouver. Gallagher started in family medicine nearly three decades ago and moved into palliative care about 12 years ago.
“We now know the earlier you introduce palliative care, the better family satisfaction and the shorter the length of stay in hospital. There are also studies showing patients live longer if they get palliative care,” Gallagher says.
Palliative services often require a doctor’s referral, but if your loved one has a long-term illness, such as Alzheimer’s, you should be proactive and ask their physician about palliative services early.
Providence Health Care is a collection of hospitals, clinics and residences in British Columbia. Its palliative services are offered not just to patients in their long-term facilities, but to those who come to emergency departments and then return home, as well as those who need to be admitted for short stays.
“We’re [the Palliative Care Team] constantly trying to sell ourselves,” says Gallagher. “I try to explain to patients and families that I’m here to help you live as well as you can for as long as you can. People are afraid to see us because they think ‘maybe I’m sicker than I thought and the docs haven’t told me.’ ” That is simply not the case.
What can the palliative team do for you?
Arriving patients are triaged by a palliative care nurse who speaks with family to see what’s needed. That might be education about the condition that brought the patient to hospital, details about the treatment plan and possible outcomes.
“We see many patients with dementia,” says Gallagher. “They usually have other acute illnesses, and those are often a consequence of the dementia. Those patients become exhausted.”
The team can help set up advance-care directives (which let the patient determine treatment at a time when they are capable of making decisions, even if the treatment itself will be needed when dementia makes decision-making impossible). They also help family members understand the new condition that brought their loved one to hospital, and its likely progression.
This team is also your translator with your loved one’s doctors.
“It’s surprising how many people don’t realize they have the right to say no to treatment, to withdraw or to stop a particular treatment. That’s their right as a patient, if the treatment is not achieving their goals. This is why people with dementia often say, ‘I’m going to choose physician assisted suicide’ and we have to say ‘you have a lot more choice than that,’ ” says Gallagher.
“For many people, their goal is simply to stay out of hospital as much as possible.”
Treatment, and choice
Staying out of hospital is not always an option. Pneumonia is one complication that often lands patients with dementia in hospital.
“And let’s say when your mum is in hospital, she climbs out of bed, she screams and cries, she’s scared because she doesn’t understand what’s happening and she becomes delirious every time she’s admitted. It’s a horrible experience for her. We can help with delirium management.
“We also say, ‘What’s going to happen in future?’ ”
The patient’s future plan could be to treat the symptoms — shortness of breath, pain, sleep disruption — but not the infection. What’s the benefit of that? “We can try treating symptoms in the patient’s home, or the facility where they live, instead of in the hospital,” says Gallagher.
“People often think ‘I have a choice of palliative care and death, or I have to carry on all the treatment,’ but it’s never that simple,” she says. “This is baffling to some people who think that medicine is all pills and surgery.”
Gallagher points to a study of patients with dementia and aspiration pneumonia, a common condition in patients with dementia and one that indicates that they have about six months to live. (There are 40 muscles involved in swallowing and it’s a highly coordinated function, one that breaks down when sections of the brain aren’t communicating properly. Patients end up with saliva, food or liquid in the lung and that leads to infection.)
“Some of the patients in the study refused going to hospital and instead treated only the symptoms at home, while the others chose to be admitted to hospital and receive treatment for the infection as well.” Result: There was no difference in the mortality rate between the two groups. “Fascinating right?,” asks Gallagher. “The point is that maybe we, as a society, over treat some things.”
Written by Jasmine Miller. Jasmine, the associate editor of Alzlive.com, has covered lifestyle, personal finance and health for major Canadian women’s magazines. Originally published on ALZlive.com.
Whether you’re new to caregiving or a veteran, there are still things to learn about the Canadian healthcare system. This series of videos from Alz Live provides a roadmap. This is part seven of an eight part series.
Before Barbara Larkin moved her 80-something mom into an assisted living facility in Maple Ridge, B.C., she would sit in her car outside her mother’s apartment and cry.
“I felt like I was leaving a four-year-old in the house on her own,” she says.
Larkin’s mother, Eveline, suffered from dementia. She was increasingly unsteady on her feet and she was unable to shop, cook and care for herself. “She’d forget to eat,” says Larkin. “She only weighed about 115 pounds to begin with, but she was down to about 95 pounds.”
Larkin and her three siblings tried their best to talk their mom into moving into an assisted living facility. “We’d drive her around to a couple of places and I’d have the brochures,” says Larkin. “Then she’d say, ‘I’d rather die than move in there.’” Finally, says Larkin, “We had to make the decision for her. And once we did, she just went.”
“When we’d visit her at her apartment, it would be like, ‘Okay, we have to go get groceries now. And then to your doctor’s appointment,’” she says.
Moving their mom freed them up to have fun with her again – “take her out to lunch and that kind of thing” in her last few years (she died in February).
When to move to a higher level of care
“It’s a highly personal decision when to move on to the next level of care and it is often influenced by finances and community support,” says geriatric psychiatrist Dr. Ron Keren, of Toronto. “There’s no formula.”
Some of the key determinants, he says, are incontinence, problems with personal hygiene, wandering, aggressive behavior and interrupted sleep.
For many people who have dementia, the decision to seek a higher level of care is thrust on them (or their family members); precipitated by a fall or a health crisis that lands them in hospital. At that point, it helps to know your options and rights when it comes to accessing care in a facility of some kind.
Live-in care at home:
Debby Blyth, of Toronto, hired a full-time caregiver through the week for her parents, and another for weekends. The paid live-in caregiver cost her about $700 per week (or $2,800 per month), including CPP, EI and income tax payments, but she watched over both of Blyth’s parents. “That was still cheaper that moving both my parents into a nice retirement home,” she says.
A full-time live-in caregiver can cost $1,900 to $3,500 a month, plus room and board. But, points out Audrey Miller, owner of geriatric care manager Eldercaring Inc., round-the-clock care may require more than one caregiver because of provincial labor laws. Particularly If you’re caring for only one individual, that can make this option prohibitively expensive.
Once she was in the assisted living facility we were able to just enjoy her.
You can access CanadianNanny.ca’s listing of paid live-in and live-out caregivers for seniors for a subscription fee of $6.99 per month plus a one-time activation fee of $44.99. The Canadian government also allows families to hire a foreign caregiver through its Live-in Caregiver Program, providing no Canadian workers are available to fill the position.
Retirement residences with assisted/supportive living services:
Accommodation can range from one room to a self-contained apartment. But This option is geared for people who want to remain relatively independent, but need a range of services that may include personal care, homemaking services, meals, activities and a way to access help in an emergency.
The facilities can be run by charitable organizations, non-profits or for-profit organizations, but they are not subsidized by the government. The cost generally ranges between $1,500 and $5,000 or more per month. If there’s a vacancy, you sign a lease, with all the rights and responsibilities of a tenant. To find out what costs are like in your area, click on your province in thisSun Life Financial guide.
Larkin paid about $2,400 a month for an apartment in an assisted living facility for her mother. “That covered her food and other costs like cable as well,” she points out. “We still had to hire someone to do her laundry.”
After Eveline developed a urinary tract infection she needed a higher level of care and the costs grew accordingly. “The bill was never itemized,” says Larkin, “but it was costing about $5,000 a month.” As is common with assisted living homes, this one didn’t offer dementia care and Larkin lived in fear that her mother would be “kicked out.”
Some retirement homes will let you bring in your own additional care, says Miller, and there are a few retirement residences that are “dementia-friendly.” If you want a bed in one of them, however, it’s going to cost you. “It’s expensive to run them and they can cost $6,000 a month or more,” she says. For a list of assisted/supportive living facilities by province, click here.
Long term care (LTC) homes (frequently referred to as nursing homes):
These homes cater to people who need 24/7 care for complex, unpredictable medical needs and personal care. They can be public, private, or run by charitable agencies or religious communities, and costs vary greatly across Canada. Some jurisdictions can pay more than three times as much as others.
For example, Alberta currently charges $1,839 per month for a private room; $1,591 for a semi-private room and $1,509 for a standard ward room. In Ontario, you’ll pay $1,708 a month for basic accommodation; $2,012 for semi-private and $2,362 for private. The maximum monthly rate in Newfoundland is $2,800 a month. To find out what costs are like in your area, click on your province in this Sun Life Financial guide.
If money is tight, most provinces offer subsidies. In Ontario, it’s based on the income tax return of the person being admitted. They’ll have to pay residence costs equal to their monthly income minus $100. The government will pay the remaining cost.
In all provinces, you’ll need a referral from a Community Care Access/Health Authority case worker to procure a bed. And you may well wait some time for one to come up.
The Care Guide lists LTC homes by province and you’ll find ratings of nursing homes by family members here.
LTC: Hurry up and wait
You’ll be asked to choose somewhere between two and five homes in order of preference, depending on your province. In Ontario, you can choose as many as five and as little as one, according to Jane Meadus, a staff lawyer and institutional advocate at Toronto’s Advocacy Centre for the Elderly (ACE).
But the pickier you are, the longer you’ll usually wait for a bed. “The government will tell you there’s always a bed available,” says Miller. “And I believe that’s true. You just don’t know where the bed is going to be. It might not be the bed you want in your home community.”
They can be very aggressive. It’s important to know your rights.
In Ontario, for example, there are 25,206 people waiting for a bed in an LTC home, and the average wait time is 113 days. Less than half of those applying will get their first choice of facility. In Nova Scotia, the average wait is 154 days. And in 2008-9, Saskatoon alone had an average of 103 people on the waiting list for long-term care.
Often, patients wait in hospital for a bed to come up. In fact, a 2012 report by the Canadian Health and Life Insurance Association found that fully 7,550 hospital beds in Canada are occupied by people waiting for an LTC bed. Given that the cost of a bed in a hospital is approximately $842 per day, compared to $126 for a LTC bed, provincial governments are eager to move you on out to the first bed available.
“They can be very aggressive,” says Meadus. “It’s important to know your rights.”
Although hospitals frequently try to push people into picking long-term care homes with shorter waiting lists, they are not allowed to tell a patient or family member which LTC facility to apply to or force them to care for a friend or relative at home.
Neither can a hospital legitimately promise round-the-clock home care as long as the patient frees up the hospital bed. “Only the CCAC has the authority to do that,” says Meadus. “And even if the CCAC does promise a certain number of hours, that can change once you get home.” (For more information on Ontario laws regarding home care and long term care, check out her website.)
That said, hospital beds are not the best place for elderly people who are not in a health crisis of some kind, Meadus concedes. “They offer lousy care for people who are there for a long time,” she says. “There’s no programming and getting fed is hit and miss. Patients will get a tray of food dropped in front of them, but no one is going to sit there and make sure they eat.”
Meadus urges people to check out a range of LTC homes before it comes down to the crunch, pointing out that, if you have a short list in mind, it could make the process of finding a facility faster.
“Look beyond the walls,” she advises. “Maybe the home is a little older, but they’ve got the care part of it right.”
Written by Camilla Cornell. Camilla is a Toronto freelance writer who specializes in health care and personal finance. In her 25-plus years of writing she has been the recipient of two National Magazine Awards and numerous nominations. Originally published on ALZlive.com.
Whether you’re new to caregiving or a veteran, there are still things to learn about the Canadian healthcare system. This series of videos from Alz Live provides a roadmap. This is part six of an eight part series.
For people with Alzheimer’s and dementia who are admitted to hospital, understanding diagnosis and treatment options, as well as investigating and accessing available supports, can be overwhelming.
Once they get home, when symptoms change (increased memory loss, decreased physical independence, for example) and needs escalate (for day programs, respite care, personal support workers, etc.), getting help becomes more time consuming and critical.
Finding those supports early has a positive impact not only on quality of life, but on longevity. So when it comes to helping patients maneuver through the processes, who comes to the rescue? A relatively new field called professional patient care navigators.
They work to reduce barriers—language, cultural, financial, knowledge-based, or emotional—to getting those supports. They are now, in Canada as well as the U.S., a key part of cancer care. They are also starting to be introduced for other chronic issues, and, in some jurisdictions, finally, dementia care too.
Why were patient care navigators introduced?
This role first appeared in 1990 in a pilot program at Harlem Hospital. Those non-medical professionals helped coordinate appointments and make sure patients kept them; they directed patients to financial assistance and communicated with medical staff on behalf of patients. Between 1995 and 2000, the five-year survival rate for patients in the program nearly doubled.
Sometimes also called “health care navigators,” these workers are trained in various fields—medical doctors, nurses and social workers are the most common.
While it might be easy to assume these services are simply a luxury that a stretched and underfunded public health care system can’t afford, research proves navigators cut costs and save lives.
Here’s a look at the two different types and what they can do for you.
Hospital-based Patient Care Navigators
“The British Columbia ministry of health has guidelines for patients 70 years or older admitted to hospital emergency,” says Linda Schwartz, a Clinical Nurse Specialist in Elder Care at Providence Health Care. “There needs to be an immediate screening of areas where people can be vulnerable: mobility, nutrition and hydration, bowel and bladder function.”
Providence Health Care, which includes 16 hospitals, clinics and residential facilities in British Columbia, serves “populations of emphasis.” Those groups include people with chronic illness—heart, lung and kidney disease, AIDS, mental illness and “urban health issues” (described as homelessness, addiction and malnutrition) and older British Columbians.
“Often older patients who come to hospital have multiple health issues,” says Schwartz. She calls them “geriatric giants”—ongoing conditions like heart disease, diabetes, incontinence. “And dementia is a big diagnosis among this group.
It’s wonderful to have a geriatric unit in a hospital, but we end up giving Cadillac service to 17 or 20 patients, and what happens to the rest?
“Emergency departments are one of the least friendly environments for older dementia patients. Things happen quickly and people must be triaged and moved along fast. For dementia patients, that’s not ideal,” says Schwartz. In fact, those conditions can exacerbate, and sometimes cause, hallucinations, hysteria and disorientation.
“What we’ve done, and in Ontario they are quite advanced in this as well, is introduce a nurse with specialized geriatric knowledge to the emergency department,” says Schwartz.
St. Paul’s Hospital has a geriatric consult team and both St. Paul’s and St. Joseph’s Hospital (two of Providence Health Care’s sites) have elder care clinics staffed by geriatricians and social workers, occupational and physical therapists, dieticians, and others.
“We have a lot of positions dedicated to providing geriatric expertise,” says Schwartz. It’s the geriatric nurse, the first point of contact, who acts as patient care navigator for people coming into emergency. “She alerts the consult team, and the team may consult the clinic for follow up if required.”
In Canada, that kind of consult team is unique to Providence Health Care, although the model is common in the U.S. and there are some in Europe as well.
“It’s wonderful to have a geriatric unit in a hospital, but we end up giving Cadillac service to 17 or 20 patients [the maximum the clinic accommodates], and what happens to the rest?” asks Schwartz.
“We really are trying to make sure older people who come here don’t fall through the cracks and I have to say it’s still challenging,” she adds. “I think we’re doing really, really good work, but there’s more to do.”
Out-patient Patient Care Navigators
Laura Burchell is a registered nurse with a BA in gerontology. For the past three years, she has been theGeriatric Care Navigator at Dartmouth General Hospital in Nova Scotia.
Emergency departments are one of the least friendly environments for older dementia patients.
The program was introduced six years ago as part of a government-funded pilot project. Since then, the funding has been cut and the hospital covers all costs, so Burchell is now the only navigator on the team.
She serves people in the Dartmouth area who are over 65 and have some element of frailty (cognitive impairment, chronic illness, mobility issues, for example) that make living independently difficult or impossible. Many of the people she sees are living with dementia.
“As I see it, the role of the navigator is to do a thorough assessment of frail elderly to determine resources and services that can be put in place to maintain independence at home, and healthy living in general, for as long as they choose,” says Burchell.
That goal is not only good for the patient, it’s good for our health care system: If people are admitted to hospital, but can’t return home after treatment, discharge can be delayed. That means longer wait times for others who need the acute care hospital bed. It’s also more expensive to “house” people in hospitals than to get them into a long-term care facility or to provide assistance in their own home.
Burchell’s patients don’t need a referral from a doctor. Patients or their caregivers can apply online to have an assessment. Burchell receives these requests and triages them, prioritizing patients based on their description of their situation.
She spends a large part of her workday in her car, visiting people in their homes where she conducts cognitive testing, mobility and functional assessments and home safety evaluations. But first there is conversation.
“We’re not bound by a certain amount of time for each visit. We just sit and have a chat,” she says. “I find with seniors they like to tell their stories. Seniors put on that very stoic mask, but as they tell stories, you garner insight into the true nature of the difficulties they are having.”
The mini mental status exam is the test she administers most often, “just to create a baseline of functioning,” says Burchell.
Some patients have already been diagnosed with dementia, but circumstances have changed. For example, she has patients who have been on a waiting list for a long-term care bed, and as their physical condition has deteriorated as months passed, their situation has become dire.
“I help them link with the care coordinator for another assessment,” says Burchell. “Maybe mom can be bumped up the list if she becomes an urgent placement.” In cases where that’s not possible, Burchell can connect with local health authorities to get the patient reassessed with an eye to qualifying for more government-funded in-home care.
After Burchell’s assessments are done, she forwards her findings to the patient’s primary care physician. If follow-up is needed—a referral to a geriatrician, physiotherapist or other specialist, for example—the doctor does that. Even if no follow-up is recommended, Burchell’s findings can help the physician.
“Family doctors used to have time to see the whole picture, they did routine home visits to check in on patients, and now they don’t,” she says. “I’m their eyes. They may think life is rosy for Ms. Smith, but often it isn’t.”
For her patients with dementia, the caregiver is often present at assessments and much of the help Burchell sources is directed at them. “We create coping strategies,” she says. “Maybe they don’t know what to do because mom wanders, so I help them come up with strategies so they can sleep at night.”
Such as? “Sensors on the doors, for example. People don’t realize that’s an option.” She’s spent many hours educating people on various safety alerts not only for appliances and falls, but for medication dispensers, too, all of which are protection that help a person living with dementia stay safely at home.
Burchell doesn’t remember how many clients she’s seen since she started this job, and when it comes to the number of referral forms waiting for her to triage, all she’s sure of is that “there are more than I can count.”
Written by Jasmine Miller. Jasmine, the associate editor of Alzlive.com, has covered lifestyle, personal finance and health for major Canadian women’s magazines. Originally published on Alzlive.com.
Whether you’re new to caregiving or a veteran, there are still things to learn about the Canadian healthcare system. This series of videos from Alz Live provides a roadmap. This is part five of an eight part series.
Once you hit what many call “the enduring stage,” you will have to help more with Activities of Daily Living, or ADLs, your loved one will experience more behavior and health issues, and you are going to need breaks and extra support.
Here’s how the system works; and how to make it work better, for you.
‘It Just Drains You of Energy’
“The later stages are very difficult,” says Debby Blyth, of Toronto, who was the main support for both her parents as her mother struggled with dementia. “I was screaming a lot inside my head.”
Among the things you can expect are visual problems and falls on the part of the Alzheimer’s sufferer, angry outbursts particularly at sundown, night wandering, appetite decline, urinary tract infections from neglecting to drink or forgetting how to swallow, incontinence and other distressing “responsive behaviors.”
Blyth remembers one horrendous evening when her mother fell while sitting on the toilet. Blyth, who had worked all day, had just left her parents’ house when her dad called. She immediately headed back and found her mother lying in the bathtub, smeared with blood and body fluids. “She was a mess,” she says. “It just drains you of energy.”
Unlike other diseases, Alzheimer’s can go on for years – and that’s not sustainable for the caregiver.
“It’s a marathon, not a sprint,” says Barbara Larkin, a Burnaby, B.C., social worker, who was a joint caregiver for her elderly mother until she died in February. As dementia progresses, she says, you’ll need the right supports in place.
Kim Angelakis, director of health and wellness for We Care Health Services, a national health care agency based in Toronto, says caregivers can lose themselves in the process.
One Statistics Canada study found 55 percent of informal caregivers felt worried or anxious, 28 percent felt somewhat stressed by the demands placed on them, and 19 percent said caregiving was affecting their physical and emotional health.
The home care vise
The first call Blyth made was to her local Community Care Access Centre (CCAC). Every province in Canada has some kind of CCAC service. These provincially run and funded organizations assess the kind of care needed to keep ill or mentally and physically disabled people living in their homes.
They can provide support to help with day-to-day activities, nursing care, occupational and physiotherapy, social workers for emotional support and a range of other services, as well as offering advice on community support services (such as Meals on Wheels and dining programs).
You usually don’t require need a doctor’s referral. Instead, a case worker visits your home to assess your needs. In Blyth’s case, the CCAC care coordinator pointed out tripping hazards and suggested putting railings in the bathroom to keep her parents safe. They also provided a few hours of homecare a week to help with bathing.Occupation therapists: How these star performers keep those living with Alzheimer’s safer, and better functioning, at home. Read Home, Safe Home
Provincial governments usually use private providers of homecare services to deliver care.
Blyth, like many caregivers, got less help than she needed. In fact, the Canadian Homecare Association notes that demand for homecare services is outpacing funding right across the country. The number of people getting homecare grew by 55 percent between 2008 and 2011 to about 1.4 million people. And yet 2010 statistics from the Canadian Institute for Health Information show that, of the $3,957 per capita spent on public healthcare, $159 (or 4 percent) is spent on homecare.
Practically, what that means is that there may be a waiting list, for service, and the government will cap the number of hours of care, says Angelakis. Case workers offer support based on needs and, in some provinces, your own ability to pay for care. “Across Canada there’s a lot of variability in the models as far as the total hour allocation,” says Angelakis.
“The problem with services like the CCAC is that they tend to be very medical model-oriented,” says Mary Schulz, director of education for the Alzheimer Society of Canada (ASC). “They’re set up to address primarily a physical problem – maybe a person is having trouble bathing or walking or making meals or doing their dressings.”
Often someone in the middle stages of AD or another form of dementia doesn’t have a lot of problems with those things, says Shulz. “The system is not all that supportive of cognitive problems as opposed to physical problems.”
A snapshot of government-provided care
How many paid hours of care you can expect from the government differs dramatically depending on where you live and even who assesses your needs. Here’s an idea of what to expect:
In Alberta, “clients with a dementia are typically considered ‘long term supportive’ clients,” says Cheryl Knight, executive director of community and seniors’ health at Alberta Health Services.
“These clients can get a maximum of 10 hours per week of direct professional service, 35 hours per week of personal support service and 26 hours per week of respite services.” If your needs exceed that ceiling, “there’s an opportunity to have the services considered for extraordinary funding.”
In Ontario, says Audrey Miller, owner of geriatric care manager Elder Caring Inc. “the maximum I’ve seen is 56 hours and that was for palliative care.” If you need help bathing, you might get one to two hours a week, enabling you to bathe twice, she says.
In British Columbia, by contrast, you could get a maximum of 28 hours of care a week, according to Peter Silin, owner of Diamond Geriatrics in Vancouver. But that would be rare, he says. “Generally, the maximum you’ll get is two hours a day.”
A social worker by training, Silin is one of the new breed of geriatric care managers, like Audrey Miller, who offer services geared to the overworked caregiver. He has accompanied elderly people to doctor’s appointments, intervened with the local health authority to get them more in-home care and watched over them in hospitals and nursing homes.
He start withs a care management assessment to identify issues, such as night wandering. Then he works inside and outside the public health care system to put supports in place that enable people to stay in their homes as long as possible. As Silin told one busy real estate agent recently: “I’ll be the caregiver so you can be the son.”
It is possible to negotiate for more hours of government-paid care, says Silin. He suggests documenting all the things you do as a caregiver on a day-to-day basis, from bathing to feeding and notifying the CCAC when the person you’re caring for loses abilities and has new symptoms.
It helps to know how to phrase your request for more care, adds Miller. She suggests saying something like “my parent is at risk of a fall – I think she needs help with bathing.” The government is well aware that it is far more expensive to provide hospital care for a broken hip, than to provide care at home, she says. “Be assertive. Ask what else you can get – what else is available? The squeaky wheel gets the grease.”
Blyth suggests making sure you’re part of the process. “It’s really important to be there when the case worker is doing an assessment,” she says. “I think if family members are involved, they feel as if they’re a little more under the microscope and they’re more willing to deal.”
Case workers are also a good source of info about other services you may be eligible for, she points out. “Because my dad was a veteran, we had a little more help. We could have someone come in to clean the house, cut the grass, clean the eavestroughs and remove the snow.”
Other people may have access to resources through workplace benefits or pension plans, a private insurer, or Aboriginal Affairs, says Angelakis.
Finally, don’t be shy about asking for help from family, friends, church groups and others. Angelakis suggests making a list of the things you are currently doing and how much time is required to meet that need on a sign-up sheet.
Supplement with private caregivers
Ultimately, you may have to supplement government-provided care with private care. Private home care can set you back $20 to $30 an hour or so for basic personal support with meals, housework and bathing, for example, and $40 to $70 per hour for nursing care. Often there’s a two-hour minimum.
To keep costs down, Angelakis suggests piggybacking two tasks – for instance, if your dad needs help cleaning the house, arrange to have a personal support worker (PSW) arrive in time to remind him to take his medication.
And, she says, “make sure you’re getting the right level of care from the right provider.” Care from a registered nurse is expensive and unnecessary for routine tasks like dressing changes or giving medications that can be carried out by a (cheaper) registered practical nurse. And even an RPN’s expertise isn’t required for doing light housework.
At We Care, and most other providers of home care, says Angelakis, a case worker will work with you to put a “care plan” in place that effectively allocates public and private sources of care. While there’s no national organization that lists home care providers, you can check Home Care Ontario for connections to homecare providers in Ontario and Alberta. (For other provinces search the name of your community or province along with “home care.”)
Written by Camilla Cornell. Camilla is a Toronto freelance writer who specializes in health care and personal finance. In her 25-plus years of writing she has been the recipient of two National Magazine Awards and numerous nominations. Originally published on Alzlive.com.
Whether you’re new to caregiving or a veteran, there are still things to learn about the Canadian healthcare system. This series of videos from Alz Live provides a roadmap. This is part four of an eight part series.
Memory Clinics are the gateway to dementia-related health care services.
Managing Alzheimer’s disease or other dementias often requires more specialized care than many family doctors offer.
Resource: eCareDiary: manage appointments, track medications and get reminders, organize important documents, coordinate care among family members
Memory clinics were designed to offer health care services from multiple disciplines to those living with dementia. From neurologists and geriatricians to speech therapists and social workers, this team approach to care was first introduced in the 1980s, often at major teaching hospitals.
The main goal of memory clinics is an early diagnosis so that intervention or treatment can also happen early.
Clinic staff conduct cognitive testing, prescribe and monitor medications, but they doesn’t replace a patient’s primary health care provider. Clinics are a supplement to that care, and patients should continue to see their GP even as they access the services of a memory clinic.
The ongoing purpose of the clinic is to facilitate access to other community resources — education, home care, day programs, etc.
There is no cure for Alzheimer’s, but for patients and their caregivers, that service will make living with the disease easier.
What is a Memory Clinic?
According to a 2007 report out of the London School of Economics, Dementia: International Comparisons, “memory clinics of some sort were identified in all the countries studied [12 high-income ones in Europe and North America] although there is no precise definition of what constitutes a memory clinic.”
In Canada, however, memory clinics have some consistency and can be characterized as a team of experts working under one roof to focus on serving the medical needs of those with cognitive impairments.
The team is usually led by a specialist (gerontologist, geriatrician, neurologist, etc.) or GP, along with what are called “interdisciplinary practitioners.”
Those often include nurses, social workers and specialized health care providers, such as occupational therapists. In some clinics, they might also include a speech pathologist, psychologist, pharmacist and others, depending on the particular focus of that clinic and its director.
Besides this specialist-practice model, many memory clinics are hospital-based; both types require a referral from a GP, but a growing number of memory clinics are being offered by GPs themselves, from within their family practices.
Regardless of the location or setup, memory clinics are — for caregiver and patient alike — a gateway to dementia-related resources within the Canadian health care system.
But, usually, those with concerns about their cognition and memory simply report their symptoms to their GP.
Some GPs will order scans and other tests and may make a diagnosis, but because dementia, especially in the early stages, can be tough to confirm, many GPs make referrals to memory clinics for that confirmation.
“When we see a patient, we take a full history of their complaint [memory and cognition] and most of the time I will order an MRI,” says Dr. Carmela Tartaglia, director of The Memory Clinic at the Krembil Neuroscience Centre at the Toronto General Hospital. Brain imaging can show physical factors that explain symptoms — a small or shrunken hippocampus, for example, is often a sign of Alzheimer’s disease.
A diagnosis of dementia can be made within a few visits to a memory clinic, and a patient could then continue being monitored and treated by their GP alone. The patient who stays with the memory clinic, however, will access greater and more specialized services.
Family-Practice-Based Memory Clinics — How They Work
Dr. Linda Lee runs Centre for Family Medicine in Kitchener, Ont., and is developing a model of family-practice-based memory clinic that will allow patients to access the care they need without a referral to a specialist. It’s a model that will not only save the public health system money, but one that will give patients and their families quicker access to what they need. (Read how the memory clinic helped one family here.)
Her clinic structure includes a family doctor who is backed by a specialist, but that specialist doesn’t see patients — they offer advice to the family doctor. Other members of the team (nurses, social workers, pharmacists, etc.) provide services directly to the patient.
“To the best of our knowledge, this model doesn’t exist anywhere else,” says Lee. Even in Europe, which is generally more advanced in dementia care than North America, memory clinics are led by specialists. “This is the first model that allows primary care to build capacity to do more than they could have done before.
“The goal of the clinic is comprehensive care that allows people to live in their own homes independently for as long as possible, to avert hospital visits and maintain the best quality of life for as long as they can. That is our aim,” says Lee. By the end of 2014, she will have trained family doctors in 63 memory clinics across Ontario.
A visit to her clinic, or one run by those she trained, begins with a diagnosis. “We have specially trained 110 family physicians so they will be able to make a diagnosis accurately, given that it’s a very challenging diagnosis to make early on,” says Lee.
Sharon Dillon-Martin is the clinic social worker and often the next step for patients. “We sit down to talk about future planning,” she says. “Where are you going to live, do you have a power of attorney, what community services do you need?” The staff occupational therapist can go do home visits and conduct an abilities assessment, which can be used to secure services through the local CCAC.
Lee’s clinic started in 2006 and her five-day Memory Clinic Training Progam, offered in collaboration with the Ontario College of Family Physicians and operating on a not-for-profit basis, started in 2008. “Dementia has largely been a specialist-managed condition,” says Lee. “With this training, we’ve been able to move much of dementia care into the primary care level in a way that provides greater access.”
The Specialist-Based Memory Clinic Model Has Selling Points, Too
In 1992, neurologist Sharon Cohen was a sole practitioner at a satellite office of the North York Hospital Seniors Health Centre. Today, the Toronto Memory Program is an expansion of that private practice, housed on the top floor of a squat commercial building minutes from the hospital.
That new space is large, but as quiet as a library. One hallway leads to the research area, where clinical-trial participants spend time; another set of locked, glass doors leads to a lab and private area where patients have blood drawn and spinal taps performed (spinal and brain fluid are the same and offer insight into amyloid protein buildup).
Beyond that, you’ll find a lecture hall ringed with enormous north- and east-facing windows, and full of upholstered chairs where caregivers learn about meditation techniques and other coping strategies.
“Everything but the scans [MRI, PET] happens here,” says Cohen. “We’re trying not to send patients all over to different locations.”
Those patients are people with cognitive impairments, including Alzheimer’s. “We see people with very early symptoms to people who are very advanced. It’s a full range,” she says. “We follow them from point of contact till death or institutionalization.”
The on-site services include driving assessments, elder-care mediation and legal advice, speech therapy and psychiatry. Hospital- and family-practice-based memory clinics can make referrals for these services, but don’t generally offer them in-house.
There isn’t one organization, one resource where you can get all these things done.
“It is quite overwhelming for a family to receive a diagnosis [of Alzheimer’s] and be faced with a large number of tasks to be done that are dispersed,” says Cohen. “There isn’t one organization, one resource where you can get all these things done. So part of the role of a good memory clinic is to try and help a person or family navigate the system and be the point of contact.”
Patients need a referral from their GP. The clinic will repeat cognitive testing to determine progress or decline, they’ll talk with the team about the patients’ symptoms and the doctor may prescribe and review medications.
The clinic sends this information to the patient’s primary care provider. Most patients will have appointments at the clinic twice a year, but their caregivers are usually in touch with staff far more frequently than that.
“As the disease changes, or as family coping evolves or breaks down, you need a clinic that will have the capability to case-manage,” says Cohen.
What does the caregiver need to keep their loved one safe, to keep quality of life high and to keep the family functioning well? It’s the clinic’s social workers who help families manage those aspects of the disease.
“We’re often filling out forms, whether it’s for parking permits or drafting letters to say this person’s not capable of managing their finances anymore, or that they need a driving test,” says Michelle Martinez, Manager of Clinical Operations at the Toronto Memory Program. “If a caregiver is overwhelmed, we can call a service directly for them.”
While some clinics focus on severely impaired, fragile elderly patients, others, like Cohen’s, are interested in prevention as well. That interest is why clinical trials are a cornerstone of the Toronto Memory Program.
“We are a big clinical trial centre,” she says, “so if someone has the opportunity and interest to participate in cutting edge research, to try new products that aren’t on the market yet, that’s something that we can make available.”
Hospital-Based Memory Clinics
Hospital-based memory clinics often see advanced and unusual dementia cases (progressive aphasia or frontotemporal lobar degeneration, for example). Patients need a referral, and the wait times can be long (five months for the memory clinic at the Krembil Neuroscience Centre at the Toronto General Hospital). While the family doctor will make the referral, it’s a good idea for caregivers to call clinics as well.
My role is to care for the caregivers.
It’s important to ask if there is a “cancellation list” and to make sure you get your loved one’s name on that. It’s also important not to wait until your situation is dire.
“Unfortunately, people still think these are illnesses of aging. When you’re repeating yourself or calling your children four or five times a day, that’s not aging,” says Tartaglia. “That gets missed for a year or two or three, or even 10 sometimes. So when patients get here, they’re often so advanced, we can hardly do an assessment at all.”
Once that assessment, including cognitive testing and various brain scans, is done, the patient has access to the clinic resources, starting with the staff social worker, “she’s kind of like part of our treatment plan,” says Tartaglia.
Her name is Maria Martinez and she helps patients find treatment outside the clinic, within the larger health care system. “People can’t sit around all day and watch TV—it’s actually really bad for your brain,” says Tartaglia, who prescribes exercise for all her patients. “Older dementia patients need to get into seniors programs,” she says.
Martinez’s job is a dual one: patient advocate with CCAC and other agencies (“sometimes I have to advocate very strongly to get patients the services they need, and other times it’s easy,” she says), and family support. “The caregiver in our clinic is as important as the patient, and my role is to care for the caregivers.”
That is done by arranging PSWs, helping with long-term care choices, and making connections to the local Alzheimer’s Society and other agencies.
Written by Jasmine Miller, the associate editor of Alzlive.com, has covered lifestyle, personal finance and health for major Canadian women’s magazines. Originally published on Alzlive.com.
Whether you’re new to caregiving or a veteran, there are still things to learn about the Canadian healthcare system. This series of videos from Alz Live provides a roadmap. This is part one of an eight part series.
People can live full lives, especially in the initial stages of Alzheimer’s disease and other forms of dementia.
“Living with dementia doesn’t mean every day is a misery,” says Mary Schulz, director of education for the Alzheimer Society of Canada. “There’s a lot that can be done to manage the disease, from medication to healthy lifestyle changes and being involved in clinical trials. Even if they can’t achieve a cure, they can sometimes improve day to day living.”
Sheryl Persoon’s mother Patricia was diagnosed with Alzheimer’s two years ago. But she still lives in a basement suite in Persoon’s Coquitlam, B.C., home and remains relatively independent.
She goes to a weekly program called “Minds in Motion” (to exercise her body and her brain). And she takes the Sky Train to visit another daughter in Vancouver, although someone has to meet her on arrival.
Patricia needs reminders when it’s garbage day and her pharmacist provides her pills in a blister pack so Persoon can make sure she’s taking them. But although Patricia sometimes gets up in arms about her children “taking away her independence” and threatens to “move to another country,” says Persoon, “she’s mostly fairly content.”
First Link:The ASC provides an excellent first contact for the newly diagnosed, particularly if there’s a First Link program in your area. First Link aims to help people with Alzheimer’s disease get the support, education and services they need for the duration of the disease.
Among other things, First Link counsellors can refer you to caregiver or patient support programs, offer information about drugs and other treatment regimens and sometimes provide news about clinical trials and promising research. Generally, your doctor will ask if he can pass your name on to First Link so that someone can call you, says Dr. Larry Chambers, scientific advisor for the ASC.
Keep in mind, however, that First Link is not available in all cities and regions across Canada. You’ll find more details about the program here. You can also call your provincial Alzheimer Society office to find out about local First Link programs (for a list of numbers), or Google “First Link” along with the name of your city or region.
MedicAlert Safely Home: This program ensures that if someone with Alzheimer’s Disease or dementia gets lost, they can be safely returned home. They wear an ID bracelet engraved with critical medical information and a 24-hour hotline number that can supply an address and/or connections with emergency responders. The cost is $60 per year. For more details, click here.
Your neighborhood pharmacist: Apart from watching out for possible drug interactions, your pharmacist can provide medication in dosettes or blister packs, enabling you to check easily on whether someone with AD or dementia is taking medication regularly.
Transit services: Toronto has Wheel-Trans. Vancouver has handyDART. Most larger centres have their own version of this service that will pick up and drop off people who are physically handicapped for doctor’s appointments and other engagements.
Help with dementia and Alzheimer’s management or decisions: Saint Elizabeth (a home care provider) offers AskElizabeth at 1-877-787-7432 and has a live chat.
Your Doctor’s Role
Regular monitoring by a doctor is crucial for managing dementia, says Dr. Barry Clarke, a family doctor who specializes in geriatrics in Halifax, N.S. “If I’ve prescribed drugs, I would want to see my patients in about two weeks to check on side effects or behaviour changes that result,” he says.
“Otherwise, I’d generally see a patient every three to six months to reassess their cognitive ability and how they’re functioning – earlier if another issue arises.”
Your doctor will also likely track your blood pressure, cholesterol levels and diabetes (if you have it), as these can have an impact on dementia as well, points out Dr. Clarke. And if you’re still working and you need to apply for CPP/QPP disability benefits or for the federal disability tax credit, your doctor will have to sign the forms.
Depending on your province, you may need a doctor’s letter to get help or care in the home.
The ASC suggests making doctor’s appointments for times when you’re likely to be well rested and at ease, and bringing along a family member or friend for emotional support.
It’s also a good idea for caregivers to track their relative’s or friend’s medications so medical staff have an up-to-date list. “You may assume that medical professionals keep each other informed,” says Schulz. “That’s not always the case.”
Since caregivers may not be able to be with their parent or friend every moment of the day, it’s wise for them to fill out an emergency contact sheet with info about the person’s health conditions and medication use. They should keep several copies tacked to the fridge, or tucked into a purse or wallet in case of an emergency.
You may assume that medical professionals keep each other informed. That’s not always the case.
Act as an Advocate
When Debby Blyth’s mother, Belle, developed dementia in her 80s, Debby always accompanied her to doctor’s appointments. “The doctor would ask how she was doing and my mom would say, ‘Oh fine. I’m just fine,’” recalls Blyth, of Toronto. “I would sit behind her shaking my head and mouthing ‘no.’”
Blyth kept track of her mom’s ailments, so she wouldn’t forget to ask the appropriate questions within the time slot allowed. And she kept track of the doctor’s advice and directions for taking medication as well. If there was a nagging health problem, or she simply wanted a second opinion on some aspect of her mother’s care, she didn’t hesitate to ask for a referral to a specialist.
That kind of help can’t be underestimated, says Schulz. For more tips on how to be an effective advocate for someone with AD, check out the Alzheimer Society’s post on ‘Working with the doctor’.
At all times, whether you are the one being tested, or the caregiver who is acting as patient advocate, speak up: push for answers; push for more time. If you can’t get in to see any doctors or specialists for a while, always say: “Let me know if a cancellation comes up. I’d be happy to come in sooner.”
Watch Out For Concurrent Conditions
If you’re the care partner for someone in the early stages of dementia, keep your eyes open for other health conditions, advises Schulz. Too often symptoms of depression and other ailments get attributed to the dementia itself. “People think, ‘Well, mom seems very sad, but wouldn’t you be sad if you had dementia?’” she explains.
In fact, the most common health problems for people who’ve been newly diagnosed with AD or dementia are psychiatric conditions like depression and anxiety, says Dr. Ron Keren, a geriatric psychiatrist and assistant professor with the University of Toronto. “It may be part and parcel of the disease,” he says, “or it may be because people have insight and they react and grieve for their perceived loss of ability.”
If you’re uncertain whether your relative or friend’s symptoms are simply a result of his AD, or whether they may indicate the presence of depression as well, check out the Mayo Clinic’s post, Alzheimer’s or Depression: Could it be both?.
People with dementia are prone to other medical conditions as well. One study found an average of eight other health problems (or “co-morbid conditions” in medi-speak) – from femur fractures to cardiovascular disease and psychiatric ailments. In fact, the lower a patient’s score on the Mini-Mental State Examination (MMSE), the higher the number of co-morbidities.
To complicate matters, people with AD may have trouble tracking or remembering symptoms, or have difficulty expressing their concerns to the doctor. “Once a diagnosis [of dementia] has been made, it’s a pretty established ‘best practice’ for doctors to listen to family members,” says Schulz.
“That’s not discounting the patient’s experience, but if there’s some cognitive impairment, their insight and their problem-solving abilities are going to be most likely somewhat impaired.”
Quebec offers a 24-hour Health Hotline: 811
Almost every province has a health hotline you can call when a medical emergency arises:
Written by Camilla Cornell. Camilla is a Toronto freelance writer who specializes in health care and personal finance. In her 25-plus years of writing she has been the recipient of two National Magazine Awards and numerous nominations. Originally published on Alzlive.com.
Whether you’re new to caregiving or a veteran, there are still things to learn about the Canadian healthcare system. This series of videos from Alz Live provides a roadmap. This is part two of an eight part series.
What’s involved in getting a diagnosis of AD or dementia?
You may be worrying that some forgetful moments are leading to disease rather than aging. Don’t hide your head in the sand.
The earlier you go for a doctor’s checkup, where it can be ruled out (maybe your forgetfulness was Vitamin B deficiency or some other underlying condition), or confirmed, you can begin to work with your doctor to develop strategies for managing it, and plan for the future.
A Personal Story
Catherine Logan was worried about her mom Patricia. “She’d always had numerous friends and lots on the go,” Logan says. “She went swimming two or three times a week for exercise and she was always involved with the church.” Lately, however, Patricia – who lives in Coquitlam, B.C. – showed little enthusiasm for her usual activities.
“I saw a loss of interest in things she had once enjoyed,” says Logan. “And she seemed to be more negative and sad. I thought she might be depressed.”
After consulting the family doctor, Logan and her brother (one of four siblings) teamed up and broached their concerns. To their amazement, the “very strong-willed” Patricia thanked them for caring enough to intervene.
“She knew something was not right,” says Logan. “But she hadn’t gone to the doctor about it because she was really scared.”
She hadn’t gone to the doctor about it because she was really scared.
Patricia, then 76, underwent a doctor’s assessment that included questions intended to tease out the presence of depression and anxiety, as well as the 30-question Mini Mental Status Examination (MMSE) to test for cognitive impairment.
What the doctor saw in the MMSE gave her cause for concern.
“Mom scored well in most of the questions,” says Sheryl Persoon, another of Patricia’s daughters. “The part she struggled with was reading three or four words and then trying to remember them later. She couldn’t.”
The doctor referred Patricia to a geriatric specialist. After two hours of testing, the specialist delivered his conclusion. “I believe you are in the early stages of Alzheimer’s disease,” he told her gently.
It was devastating at the time, admits Persoon. But diagnosing Alzheimer’s early has meant that her mother has had time to plan for the future and has had access to drug treatments that aren’t available to people in the later stages.
“We feel very lucky that our doctor was so proactive,” she says.
Why Early Diagnosis is so Important
Getting a diagnosis of Alzheimer’s disease (AD) or another form of dementia is the first step toward getting treatment. And yet, it’s estimated that fewer than 25 percent of cases of Alzheimer’s disease in Canada are diagnosed—even though cognitive impairment and dementia are present in about a fifth of the elderly population, according to the Alzheimer Society of Canada (ASC).
There are a few reasons for this dire situation.
People may not consult their doctors because they’re afraid to acknowledge that dementia is a possibility. “In our national surveys we know that it’s feared only second to cancer,” says Mary Schulz, director of education for the ASC.
Even if they are willing to go for diagnosis, 4.4 million Canadians don’t have a family physician. According to a 2012 Statistics Canada survey, not all of those people want one, but some 800,000 said they didn’t have a place to go for regular medical care.
Sometimes, however, people with dementia and their families simply don’t recognize the signs. It’s not about forgetting where you put your keys, says Schulz. “It’s about memory loss and changes that affect your ability to function day to day. Things like forgetting how to make a meatloaf when you’ve been doing it your whole life.”
In some cases, as she points out, dementia doesn’t show up as a problem with memory at all. “Quite often people will demonstrate changes in behavior or personality,” says Schulz. “They may become much more irritable or more withdrawn and apathetic. These could be the signs of lots of other conditions, but they could also be the signs of early stage dementia which often go unexplored.”
“There’s no blood test for diagnosing dementia,” says Schulz. “It’s really a process of elimination.” Usually, your family doctor (although you may be referred to a geriatrician or other specialist) will start by administering a test, like the MMSE or the Montreal Cognitive Assessment, a test used across Canada that is slightly more effective for picking up mild cognitive impairment.
If there is cause for concern, says Dr. Clarke, the doctor must determine “whether this is neuro-degenerative Alzheimer’s or another form of dementia, or whether something else could be responsible.”
To rule out other causes, your doctor should review your medication history to see if you’ve recently started on a new medication that might cause a reaction or interact with other drugs you’re taking.
There’s no blood test for diagnosing dementia.
Make a list of medications for the doctor, or simply throw the whole kit and caboodle into a bag and bring it to the doctor’s office with you, suggests Dr. Clarke. “The first three concerns are drugs, drugs and drugs.”
The doctor will probably ask you about recent illnesses or life events, because medical conditions or life changes can trigger worrisome symptoms. Then he or she should check your blood pressure, temperature and pulse to assess your overall health and order blood and urine tests to make sure there’s no underlying infection.
Your doctor will send you for a Computerized Tomography Scan, commonly known as a CT Scan, of the head, If there’s no other obvious cause for your symptoms. This is to rule out other conditions such as tumors or strokes that require different treatment.
By the time this testing process is done, the doctor should have a diagnosis, although if the results are still inconclusive, he or she may refer you to a specialist for additional testing.
Once you get the diagnosis of AD or dementia you can begin to work with your doctor to develop strategies for managing it, and you can plan for the future.
Many patients are referred to memory clinics to confirm a diagnosis, for ongoing monitoring of symptoms and for assistance accessing local resources. (For more on memory clinics, click here.) While it may seem shattering at first, says Schulz, it’s not the end of the world. “There are all kinds of people living with this disease and doing exciting things and living a happy life.”
How to Talk so the Doctor Will Listen
These days, many doctors are well educated about dementia, says Dr. Barry Clarke of Halifax, N.S., a GP who specializes in geriatrics. But they may not always recognize the signs in the 12 minutes allotted for a routine checkup. You have to make your case.
“Don’t be polite,” advises Dr. Clarke. “If we were in a social place, we would try to cover up when someone forgot something as a social courtesy. This is not that place. It’s time to be very honest and speak up.”
Specific examples help, adds Schulz. Instead of saying: “I’m just not remembering things like I used to,” say: “I’ve begun to forget everyday words – it’s like they’ve simply disappeared from my brain. Or my mom got lost doing errands in her own neighborhood.”
Dr. Sandra Black, a neurologist at Sunnybrook Health Sciences Centre in Toronto, suggests keeping a list or a journal of symptoms, along with the date they occur because somebody will ask you: “‘When did that start?’”
Timing is important, says Dr. Black, because the doctor will have to rule out other treatable causes for the symptoms–sleeping problems, a reaction to a new medication, an infection or depression.
There’s some controversy over whether drugs used to treat AD actually work. But, like many caregivers, Persoon credits the medication her mother Patricia takes with slowing her symptoms. “She started with Exelon patches, but that didn’t seem to work so well,” says Persoon. “Now she’s on Aricept, and we really do feel it has helped.”
Medications for Alzheimer’s disease work in one of two ways, says Dr. Chambers.
Drugs like Aricept, Exelon and Razadyne are cholinesterase inhibitors and may have more effect in the mild to moderate stages of AD. Doctors believe they prevent the breakdown of an enzyme that causes the neurotransmitter acetylcholine – a chemical messenger important for alertness, memory and judgment.
A drug like Ebixa, by contrast, is believed to block the reuptake of another neurotransmitter, glutamate, possibly helping to preserve cognitive function and memory in the moderate to severe stages of the disease.
Doctors sometimes resist prescribing drugs for AD. In fact, according a recent article in the publication Chronic Diseases and Injuries in Canada, only about 50 percent of dementia patients are taking medications for AD.
There could be good reasons for that, points out Dr. Chambers. Most medications are only effective in the early stages of AD, he points out, and even then, they only help about half of the people who take them. They can also have some nasty side effects – especially when combined with other drugs you may be taking – and the effects wear off over time.
“They are not a cure,” says Dr. Chambers. Nonetheless, he says, your doctor should at least be willing to have a conversation about them.
Written by Camilla Cornell. Camilla is a Toronto freelance writer who specializes in health care and personal finance. In her 25-plus years of writing she has been the recipient of two National Magazine Awards and numerous nominations. Originally published on Alzlive.com.
Whether you’re new to caregiving or a veteran, there are still things to learn about the Canadian healthcare system. This series from Alz Live provides a roadmap. This is part one of an eight part series.
In Canada, we have a single-payer health care system, a great achievement.
However, it’s not a market-driven system; therefore it’s not as responsive as it should be.
The Canadian numbers of those with Alzheimer’s will climb. Here’s what it’s like for those who entered the system in the early days of disease awareness.
The gateway to ‘The New Normal’
Jeff Willis’s wife of more than 20 years thought he was just stressed out. The couple and their two children had recently moved from Alberta to Ontario and bought a new home. Jeff, then an artillery officer with the Canadian Armed Forces, was starting a new job.
Some absentmindedness, a degree of distraction and forgetfulness would be in order. Jeff’s new co-workers in Kingston, however, suspected a deeper problem.
Jeff would be late for meetings or miss them altogether. He failed, three times, a standard exam required for Canadian Armed Forces employees “which is so not him,” says Vicky, his wife, from their home in Gananoque, Ont.
“Jeff has three degrees, including a masters in history. For him to fail and shrug it off seemed odd, but we were moving and trying to get settled…” she says, her voice trailing off as if she is still trying to make sense of all that has happened in the past few years.
Jeff, then 47, was dispatched to a doctor on base, and from there, the process (cognitive testing; visits with a specialist) moved quickly. A neurologist in Ottawa made the diagnosis: frontotemporal dementia, or FTD.
Once called “Pick’s disease,” FTD usually strikes people in their 50s and 60s and accounts for 10 to 15 percent of all dementia cases. It’s a form of cell damage that causes the brain to shrink in the areas behind the forehead and the ears, regions that control speech, movement, planning and judgment.
There is no cure or drug treatment for FTD and, on average, people survive six to eight years after diagnosis. Jeff is 52 now, he can no longer speak, and he was diagnosed five years ago.
Once the military had a diagnosis and a reason to release him, they did release him.
FTD is just one of the many diseases that cause dementia
Dementia is a general term for a decline in mental ability severe enough to interfere with daily life. Alzheimer’s is the most common disease to cause dementia, and has become a chronic public health issue in Canada, with the aging of the baby boomer population.
People can live for 20 years after a diagnosis of Alzheimer’s disease, but, on average, people live four to eight years after the onset of symptoms.
As those years pass and function declines, care needs in general – and health care needs in particular – will increase.
For Jeff, military service brought with it health benefits beyond those available to most Canadian employees, like prescription drugs, a few pairs of glasses and dental exams. It also brought quick access to many levels of care. You would think that would be a good thing, but “it was and it wasn’t,” says Vicky.
“Once the military had a diagnosis and a reason to release him, they did release him and we were stuck by ourselves,” she says. “We had to get into the civilian end of it.”
The civilian end, meaning Canada’s lauded and lamented universal health care system, has many enviable benefits compared to programs in wealthier nations. But quick access and responsive care are not chief among its hallmarks.
Searching for the Right Care
“Let me be very clear: I’m a big advocate of a single-payer system, a big advocate of no one having to mortgage their house if their child needs care,” says Francesca Grosso, co-author of Navigating Canada’s Health Care, A User Guide to Getting the Care You Need. “But it’s not a market-driven system; therefore the system is not as responsive as it should be.”
What does that mean to those of us searching for specialists, referrals, second opinions, community services or any of the other resources caregivers need for loved ones diagnosed with dementia or Alzheimer’s?
Like Vicky, we are, to a certain extent, on our own. “That’s why it’s so important for us to be stewards of our patient journey to the extent that we can,” says Grosso. “We are the only constant.”
Vicky quit her job to be Jeff’s full-time caregiver and won a 2014 Heart of Home Care Award for that dedication and love.
But she was rudderless at the start.
“It’s all of a sudden thrown at you that your husband can’t drive anymore. He’s not going to be able to work. He can’t communicate…he talks but doesn’t necessarily process a conversation. If you ask a question, he’ll give you a bizarre answer or no answer,” Vicky says, detailing all the ways Jeff has been affected by the disease.
“He wanders, so he’s constantly on the move. His judgment in eating is gone. If you give him something, he’ll eat and eat and eat without any awareness of when he’s full. He’s incontinent. He’s cold all the time, his nervous system seems to be lacking something….”
eldercarecanada.ca. Founded by Pat Irwin, this advice and action consulting service available across Canada tackles everything from setting up home care, finding a retirement residence and moving you in, clearing the house for resale and keeping in touch as care needs change. They help navigate the health care system, too.
Vicky’s first tentative call to her Ontario Community Care Access Centre, which assists people in need of a host of services (including admission into long-term care homes), was less than helpful. “They said, ‘What do you need?’ and I had no idea,” she remembers. “I just said, ‘I’m not sure’ and the woman said, ‘Phone back when you know what you want.’”
She’s quiet for a long moment before adding: “I was put off.”
Her first vital caregiver supports came not from the health-care system directly, but from its not-for-profit offshoots.
Vicky reached out to the Alzheimer Society of Ontario, which led to support groups in her area (where she learned that the response she got from the CCAC is common). The Red Cross provided a personal support worker for three hours a week.
After about half a year, Vicky wasn’t a novice caregiver and had a clearer sense of what the CCAC could do for her and Jeff. She needed to investigate long-term care facilities, she needed more at-home help, and she wanted counseling, for starters. When she called back, “they were a bit more accommodating,” she remembers.
Jeff recently moved into long-term care, a decision Vicky describes as one of the toughest she’s ever made. She’s not the primary caregiver anymore, but she spends hours every day with Jeff and she has a new role.
“I’m his advocate now,” she says. “It’s up to me to make sure he gets the care he needs, that he’s being well taken care of.”
Hope For The Future: Clinical Trials
Doctors are constantly evaluating new interventions for treating AD and dementia. But finding out about these clinical trials isn’t always easy.
If your doctor is affiliated with a teaching hospital or a university, he or she may be able to advise you of ongoing studies, says Dr. Chambers. But many family physicians won’t have access to that kind of knowledge. “If you want to participate in a clinical trial you may have to do a little research on your own,” he says. Possible sources of information include:
The ASC office in your area – particularly those with a First Link program – may have knowledge of ongoing clinical trials. Or try doing an Internet search for “clinical trials” along with your province name.
Memory clinics often either conduct or know of ongoing studies. You’ll need a referral from your doctor.
The Consortium of Canadian Centres for Clinical Cognitive Research website has information on clinical trials across Canada.
Trial Match can pair you up with clinical trials in the U.S.
ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world.
Clinical Study Connect will notify you about clinical trials, including new treatments and the latest clinical research studies.
Once you have an idea of what’s out there, you’ll need to “be a good consumer” in order to determine the risks and rewards of participating, says Dr. Chambers. Check out this fact sheet by U.S.-based National Institute on Aging on participating in clinical trials.
Our System; Our Future
Annually, Canada spends nearly 12 percent of GDP on health care; only four countries spend more than us (the U.S., Germany, France and the Netherlands)
Still, as well funded as it is, the system often requires very long wait times; coverage from province to province is inconsistent; and stories of Canadians going abroad for necessary treatments are not uncommon.
“Our universally funded, portable health-care system is not universal, nor is it portable,” says Grosso. As effective and enviable as it may be, the system is opaque, tough for lay people to understand and navigate successfully. So, we’ve designed this eight-part series specifically for the caregiver who needs help for a loved one diagnosed with dementia. This is your roadmap.
Written by Jasmine Miller, the associate editor of Alzlive.com, has covered lifestyle, personal finance and health for major Canadian women’s magazines. Originally published on Alzlive.com.