Is it Alzheimer’s or another dementia form? Why doctors need to distinguish

Is it Alzheimer’s or another dementia form? Why doctors need to distinguish

Alzheimer’s disease now affects an estimated 5.5 million Americans, and after decades of feverish work, researchers have so far failed to find a treatment that halts or reverses the inexorable loss of memory, function and thinking ability that characterize this feared illness. But researchers have been quite successful at devising ways to diagnose Alzheimer’s earlier and… (more…)

How do you manage aggressive and challenging dementia behaviors?

How do you manage aggressive and challenging dementia behaviors?

One of the most difficult aspects of being a caregiver is having to cope with aggressive or other challenging behaviors that the person you care for exhibits. Other examples of challenging actions includes hallucinations, verbal abuse, anger, running away, taking clothes off, swearing, agitation, lack of appreciation. One of the secrets is that as a caregiver your response is a key on managing them and can influence the future reoccurrence.

The first thing to do is understand why these behaviors are occurring. The answer lies in 3 areas for people with dementia. People react in this way because of fear, confusion, and pain. They feel helpless or afraid and react to protect themselves. The first thing to do as a caregiver when these difficult behaviors erupt is take a step back and try to understand what is happening that is triggering them.

Dementia directly impacts the brain. It causes people to act in uninhibited, unfiltered ways. It directly impacts our ability to think, find words, or control feelings or what we do. It causes confusion. Take a moment and imagine what that would be like for you. It also tends to exacerbate the personality traits the person had prior to the onset of the dementia.  If you were a mean person before your diagnosis, those men traits may come out in a more intensified way as your condition worsens.

As caregivers we have to remember that people suffering from dementia still need to be respected. They want their wishes to be considered. They also want to feel they have some control over their environment. What may be surprising is sometimes they even regret these negative behaviors. They might not be able to express those feelings but it is important for caregivers to be aware they are there.

Caregivers can do some things to help manage these incidents when they occur:

  • Try to identify the cause of this behavior. Why are they reacting this way? What are they afraid of? What are they feeling? Try to make sense out of the reaction of a loved one.
  • Respond in a calm and comforting manner. Don’t argue. That will trigger more aggression. Don’t force the issue to prove you are right and they are wrong. Nobody will win that battle. Remember your body language. Smile and appear relaxed. Use direct eye contact. Be aware of the tone of your voice and the messages you are sending both conscious and unconscious.
  • Take a moment and imagine not knowing where you are. People often become combative and want to leave a place because they don’t recognize where they are. Try to gently redirect the confused person. Play a favorite song, go for a walk, take out a photo album. Use pictures or other concrete, tangible cues to help them focus and understand where they are at and why they are there. Keep your responses simple and direct. Say something to acknowledge their feelings like “I know it is confusing”, or “we can’t go now because it is very late or it is pouring rain” or whatever makes sense for you. Think about a response that will help them feel safe, cared for, and gets to the root of their fear.
  • Pay attention to patterns of behavior. Do these episodes occur at a particular time    regularly?  Some people experience sundowner syndrome where they get more confused as it gets dark.  Did something happen to trigger these episodes? What happened before they got agitated?
  • Look at the environment. Is there too much noise or stimulation? Is it too hot or too cold? Are there certain people that seem to upset the person receiving the care? Is being in a new place problematical and perhaps confusing?
  • Validate their feelings. Be understanding about what they are trying to communicate even if it is difficult to perceive. Try to collaborate rather than confront the person you are taking care of. If you overtly challenge what is being said or express doubt about it that can trigger an angry episode.
  • Become a master of distraction.  Try to use distraction as a technique to manage negative episodes and outbursts. Think about their favorite foods, hobby, music, photographs, clothing, or television show. Sometimes talking about people they like can ease the tension. Pay attention to what works and have it on stand by when a new outburst occurs.

 

This is very hard but also very important: Try to separate the person from the disease.

Dementia damages the brain and so people experiencing it are unable to control their thoughts, actions, feelings, and behavior as a result. Try not to personalize the negative interactions. Set boundaries for yourself and the person receiving care regarding physical safety. You cannot permit violent behavior that might potentially harm you or the person you are caring for. If this happens consult a physician about how to manage this issue. Take a time out for yourself if you need it. You must take care of yourself as a caregiver. That may be the most important tip of all.

Creativity and Dementia

Creativity and Dementia

I recently visited my husband at the long term care facility where he now resides and I was impressed by his latest creative work of art. This time he had all of the things out of his bathroom cupboard, his mouthwash, hair brush, plastic glass, soap and toothbrush arranged in an interesting manner on the counter by the sink in the small “kitchenette” area of his room.

It looked like a small city scape, I thought, with the brush acting like some kind of bridge between the glass and the soap. The mouthwash had the toothbrush carefully balanced horizontally on it in the background.

“Well this is nice” I said. “Why is all of this out here?”

I received the usual response, which was really no response, as he cannot effectively articulate what he was trying to do with the items. This was not the first time I have arrived to find modern day sculptures around his room. Often the Styrofoam cups and plates that snacks arrive on are stacked in an interesting and sometimes gravity defying pile on the headboard of his bed. The toilet paper rolls and the paper towel rolls (full ones and empty ones) always seem to need to be balanced upon one another in a precarious manner.

My husband has vascular dementia and that has robbed him of the ability to remember his friends and family. He knows that I am his wife, I think, but he does not remember my name. After caring for him for several years at our home it became a matter of safety for him and sanity for me that he be moved into a long term care facility.

He had wanted to be an architect when he was young but circumstances led his to being an accountant for over 40 years. I can only guess that the creative part of his mind now wants to express itself when other forms of communication have become difficult.

He also amuses himself by re-arranging the various stuffed animals that occupy his room. There are two stuffed dogs – a black and white one that has long ears and a small white poodle replica. These dogs are often in unique positions and are sometimes on the bed in the middle and sometimes they are tucked into the top. The smaller poodle dog can be found whispering into the larger dog’s ear or on occasion it is the other way around. The dogs may be sitting back to back on some days or they might be in a face to face position. They are usually on the small table that is in the corner of the room and my husband encourages me to say hello to them when I enter the room. He often asks me what their names are and I tell him that their names are Spot and Fifi.

spot and fifi

Recently the dogs have been joined by a hand knit bear that is sporting a pair or red pants and a multi coloured sweater. The bear does not seem to interact with the dogs but rather enjoys sitting on his own chair or sometimes he is on the headboard of the bed. I have no idea where the bear came from but he seems to be a permanent resident now. I now have to state his name each time I arrive – I have decided to call him “Beary”.

I find it quite amazing that he is able to entertain himself this way when there are so many other things he can no longer do. I would never have thought that he would have anything to do with stuffed animals as I am sure his sense of masculinity would have precluded that when he did not have this disease.

My husband does not want to interact with the other residents doing crafts or exercises but he does seem to like his activity of using items in his control to build structures. He shows no interest in the Legos or the Lincoln logs out in the common area.

If you have someone in care I would recommend that you try to find something in the creative vein that they might like to do. It could be as simple as putting photos in and out of the photo album with the pockets that you slide pictures into easily. If you have photos of family members or things that the resident likes such as golf pictures, landscapes or cityscapes, dogs or cats or perhaps certain types of cars. It might help to write on the back of each picture in large printing who or what the pictures are. A fun activity could be to sort out all of the people pictures from the pet pictures.

Perhaps when you visit you can empty out a drawer and the two of you can fold the clothes and organize them and put them back in the drawer. I know that my husband is a very tidy folder and we can spend some time getting that task done. It seems to give him a sense of accomplishment.

I also have brought a target and some bean bags that you can throw through the holes in the target. We do not keep track of the points but it is always fun to see how far away we can put the target and hit the holes with the bean bags. Even more interesting is finding the bean bags for this activity since they sometimes end up in very different places from where they were last placed. A good game of “Hunting for the Bean Bags” usually starts this activity.

If you have a person who used to like to knit then a large ball of wool and large needles could be brought in and the first couple of rows done on a simple knitting pattern, I saw a show where a person got all kinds of seniors in care facilities making squares of knitting and she then felted those squares and made them into purses and other things.

On my next trip I plan to bring in some poker chips that are various colours and have them all mixed together in the box and ask that my husband sort them out into the proper colours on the rack they go in.

If you have a person that you care about in a long term care facility with dementia then I would encourage you to try to find their creative side. It may surprise you to find out how they can still be imaginative. Dementia may have robbed their mind of many things but it seems it cannot quite put out the spark of creativity.


You can learn more about Lee’s experience caring for her husband in Dementia in the Family.

Don’t write us off: People with dementia press for more rights – and respect

Don’t write us off: People with dementia press for more rights – and respect

Ten months ago, Peter Mittler stood before a global audience of Alzheimer’s disease researchers and advocates and decried the indignities that people with dementia undergo. He knows the subject intimately: Mittler, an 86-year-old British psychologist, was diagnosed with mild Alzheimer’s in 2006. “Everybody thinks that we are just a medical problem,” Mittler told his audience. “People… (more…)

Dementia Rates Decline Sharply Among Senior Citizens

Dementia Rates Decline Sharply Among Senior Citizens

A new study finds that the prevalence of dementia has fallen sharply in recent years, most likely as a result of Americans’ rising educational levels and better heart health, which are both closely related to brain health.

Dementia rates in people over age 65 fell from 11.6 percent in 2000 to 8.8 percent in 2012, a decline of 24 percent, according to a study of more than 21,000 people across the country published Monday in JAMA Internal Medicine.

“It’s definitely good news,” said Dr. Kenneth Langa, a professor of internal medicine at the University of Michigan and a coauthor of the new study. “Even without a cure for Alzheimer’s disease or a new medication, there are things that we can do socially and medically and behaviorally that can significantly reduce the risk.”

The decline in dementia rates translates to about one million fewer Americans suffering from the condition, said John Haaga, director of behavioral and social research at the National Institute on Aging, part of the National Institutes of Health, which funded the new study.

Dementia is a general term for a loss of memory or other mental abilities that’s severe enough to interfere with daily life. Alzheimer’s disease, which is believed to be caused by a buildup of plaques and tangles in the brain, is the most common type of dementia. Vascular dementia is the second most common type of dementia and occurs after a stroke.

The new research confirms the results of several other studies that also have found steady declines in dementia rates in the United States and Europe. The new research provides some of the strongest evidence yet for a decline in dementia rates because of its broad scope and diverse ranges of incomes and ethnic groups, Haaga said. The average age of participants in the study, called the Health and Retirement Study, was 75.

The study, which began in 1992, focuses on people over age 50, collecting data every two years. Researchers conduct detailed interviews with participants about their health, income, cognitive ability and life circumstances. The interviews also include physical tests, body measurements and blood and saliva samples.

While advocates for people with dementia welcomed the news, they noted that Alzheimer’s disease and other forms of memory loss remain a serious burden for the nation and the world.  Up to five million Americans today suffer from dementia, a number that is expected to triple by 2050, as people live longer and the elderly population increases.

The number of Americans over age 65 is expected to nearly double by 2050, reaching 84 million, according to the U.S. Census. So even if the percentage of elderly people who develop dementia is smaller than previously estimated, the total number of Americans suffering from the condition will continue to increase, said Keith Fargo, director of scientific programs and outreach, medical and scientific relations at the Alzheimer’s Association.

“Alzheimer’s is going to remain the public health crisis of our time, even with modestly reduced rates,” Fargo said.

Although researchers can’t definitively explain why dementia rates are decreasing, Langa said doctors may be doing a better job controlling high blood pressure and diabetes, which can both boost the risk of age-related memory problems. High blood pressure and diabetes both increase the risk of strokes, which kill brain cells, increasing the risk of vascular dementia.

“We’ve been saying now for several years that what’s good for your heart is good for your head,” Fargo said. “There are several things you can do to reduce your risk for dementia.”

Authors of the study found that senior citizens today are better educated than even half a generation ago. The population studied in 2012 stayed in school 13 years, while the seniors studied in 2000 had about 12 years of education, according to the study.

That’s significant, because many studies have found a strong link between higher educational levels and lower risk of disease, including dementia, Lang said. The reasons are likely to be complex. People with more education tend to earn more money and have better access to health care. They’re less likely to smoke, more likely to exercise and less likely to be overweight. People with more education also may live in safer neighborhoods and have less stress.

People who are better educated may have more intellectually stimulating jobs and hobbies that help exercise their brains, Lang said.

It’s also possible that people with more education can better compensate for memory problems as they age, finding ways to work around their impairments, according to an accompanying editorial by Ozioma Okonkwo and Dr. Sanjay Asthana of the University of Wisconsin School of Medicine and Public Health.

Yet Americans shouldn’t expect dementia rates to continue falling indefinitely, Haaga said.

Although educational levels increased sharply after the World War II, those gains have leveled off, Haaga said. People in their 20s today are no more likely to have graduated from college compared to people in their 60s.

“We have widening inequality in health outcomes in the U.S.,” Haaga said. “For people without much education, we’ve had very little improvement in health. The benefits really have gone to those with better educations.”

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation, and coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

By Liz Szabo

Patients With Dementia Present Communication Challenges In Hospice Care

Patients With Dementia Present Communication Challenges In Hospice Care

Dementia took over Pauline Finster’s 91-year-old mind long ago and she may die without having another real conversation with her daughter.

After Finster broke her hip in July 2015, Jackie Mantua noticed her mother’s speech ebbing until she only said “hi,” or that she felt fine. Mantua last heard Finster speak six months ago.

Finster’s hip surgery led to a series of medical interventions that left her with poor circulation in her legs. Then gangrene set in. Mantua won’t look at the dead tissue on her mother’s right foot that is now creeping from the toes to heel.

She has instructed the staff at the AlfredHouse assisted living home in Rockville, Md., where her mother has been in hospice care since earlier this summer, to keep Finster on Tylenol to hold back the gangrene’s discomfort.

Is that enough? It’s really all she can do for her mother at this point, Mantua said.

Hospice’s purpose, at least one of them, is to ease a dying patient’s pain at the end of life and improve the quality of that life. But what’s to be done when a dementia patient in her waning days can’t communicate her pain or help identify the cause? Or resists taking medications?

All those concerns can be troubling for family caregivers for loved ones with dementia and in hospice care, according to a recent study in the American Journal of Alzheimer’s Disease & Other Dementias.

Families often describe a cancer patient’s last months as stressful but meaningful. That isn’t the case with dementia patients because the disease changes the patient’s personality and causes behavior issues, according to George Demiris, one of the study’s authors and a professor of biobehavioral nursing and health systems at the University of Washington’s School of Nursing.

Caregivers who took part in the study said they worried that their loved ones were in pain, but unable to properly express it — and that possibility disturbed them, according to interviews with families taking care of dementia patients in their last stage of life.

Multiple participants described feeling frustrated and defeated by patients’ cognitive difficulties and changing emotions, the study reported. Some described the patients as “prisoners” inside their bodies.

Helping a dementia patient in pain can be challenging for hospice care providers, too.

Previous research, cited in the recent study, found patients with dementia were prescribed lower doses of opioids than patients with cancer with similar pain scores.

Other research cited found that hospice nurses caring for such patients frequently asked relatives to interpret patients’ “pain signals” to help them assess pain. For example, one caregiver knew her mother was in pain when she moved a certain way in her chair. Another recognized his wife was in pain when a home health care aide gave her a bath by observing how she squeezed the aide’s hand.

Sometimes, patients gasp for air or repeatedly touch the same part of their bodies.

Mantua said she watches her mother’s face and stays vigilant for winces or grimaces. Her face is still expressive, Mantua said. Still, there are no words, only moans to indicate something is wrong.

Recently, Mantua said her mother has been acting “strange.” Instead of her usual vacant but happy smile, Finster looked at her daughter with a “horrified” expression. Mantua told the hospice chaplain that it looked like her mother had seen the devil.

The cause?

“You have no idea because she can’t say anything,” Mantua said. “I was saying ‘What’s wrong? What’s wrong?’ and she’s just looking at me like crazy.”

Finster has had dementia for 10 years. She has spent most of that time in facilities with increasing levels of care, moving from an independent living facility, to assisted living to memory care. Mantua has felt some of the frustration that caregivers of other patients with dementia have experienced. Three or four years ago, when Finster still had a phone in her room, she sometimes called her son Les — Mantua’s older brother — 10 times to leave him the same message that people were coming into her room and stealing her food. She simply forgot that she had called before.

Finster’s years of cognitive decline have taken a toll on Mantua and her family.

“You get to the point you want them to die because it’s hard,” Mantua said. “It’s hard to deal with. It’s a very helpless feeling.”

Now 53, Mantua is a mother of three children between the ages of 27 and 31 and grandmother to twin five-year-old boys. She said she doesn’t have the patience or natural caretaking abilities to tend to her mother full time.

It comforts her to know that her mother is looked after by a trained staff 24 hours a day, but for families who find themselves as the primary caregivers for dying dementia patients, the job can lead to anxiety, depression and grief, according to the recent study.

“Caregivers stated that patients were combative because they could not understand that interventions were meant to help them, or that they forgot about past pain and so rejected attempts at assessment and treatment,” the study said.

For families, a loved one with dementia can become like a stranger who grows angrier and more aggressive than the person they remembered, said Demiris, which “complicates the caregiving experience.”

Pauline Finster isn’t aggressive anymore. Mantua remembers when Finster’s dementia made her paranoid and angry. She was once so combative, the staff at her former assisted living facility wouldn’t try to feed her unless Mantua or her brother were present.

The decision to begin hospice care wasn’t easy for Mantua or her family.  She said it feels like her mother is already gone.

There isn’t much for Mantua to do when she visits her mother at AlfredHouse. She chatters as Finster dozes, cradling a baby doll that is always with her. Someone at the assisted living home regularly changes the doll’s clothes, which amuses Mantua.

For now, she keeps driving an hour once every other week from her home on Maryland’s Eastern Shore to Finster’s room in Rockville where they wait for the end together.

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

By Rachel Bluth

Dementia training for caregivers: is it important?

Dementia training for caregivers: is it important?

The caregiving community is incredibly diverse, but it seems we can agree that dementia caregivers — both family and professional caregivers — should be trained. Dementia caregiving is a world where the ‘normal’ rules don’t apply and we all need guidance learning to support, motivate, and keep people with dementia safe.

Family caregivers and professional caregivers both report that they wish they’d gotten training in dementia sooner and that it makes their lives easier — while helping them take better care of dementia patients.

Even at the assisted living facility where I’m a nurse, where I’d say the majority of my residents have dementia in some form, our aides have no idea how to handle it.

One resident consistently tries to “go home,” often packing up all her things, trying to get out the doors etc. The best way to calm her, I’ve found, is to tell her something to the effect of “the moving truck broke down and they won’t be able to fix it until tomorrow.” She accepts that and goes about her day.

So many times I’ve had to coach my aides because they try to prove to her that she lives at the facility, showing her name on her door and things. This only leads to her becoming agitated, then I have to medicate her because nothing will calm her down.

I like to explain it like this to my aides: imagine you’re finishing up your shift and someone tells you that you can’t leave, you live there and it’s time for you to get into bed. You know 100% that you don’t live there. When no one lets you leave you get mad, and scared, and you just want to get out of there–these people are keeping you in captivity. You’ve got to get home to your kids, go grocery shopping, and no one will let you go home. You haven’t worked here that long and now they’re telling you that you can never leave.

Because dementia patients can’t be “taught” out of their delusions. It just doesn’t work that way. So yeah, dementia training should be 100% mandatory. – Devon C.

Here’s what our community members have to say

The focus for many places, caregiving organizations, and doctors seems to be on what the dementia patients have lost ability to do. There is still so much they can do, respond to, which if we help facilitate will make the patients daily life meaningful. – Colleen H.

One of my mother’s caregivers from the agency was up all night arguing with my mother about whether there was a baby in the house. My mother asked “Where is the baby?” The ones that had training in dementia knew to answer with, “the baby is at your daughter’s house tonight so that you can rest.” – Barbara K.

I don’t think it’s a bad idea at all. My husband has Alzheimer’s/dementia and sometimes it is so hard for me to handle the cognitive /not cognitive moments with him. I try to just “go along” with those moments, but, it is very difficult. If there is a better way to handle it with proper training, sign me up! – Kathleen S.

I agree training would be great. Everyone doesn’t have the patience to deal with dementia/Alzheimers patients no matter how trained they are. They first need a heart to care and understand that this isn’t an easy job. – Quince J.

I’m caring for a grandparent and I was totally unprepared for the multiple bad episodes. Even her gerontologist isn’t much help. – Fern L.

There are times that you will wish you had training when they have a really bad episode. That training can make a big difference to their care and your approach. – Nicole K.

I’ve done all my own training on my own time with my own money because I adore these people and they deserve to be understood and their families deserve to know their being well taken care of. – Michelle W.

I used an agency to get a caregiver for my mom with Dementia, it was amazing how little they knew and were just trained on the cleaning part. I was training them and paying them hundreds of dollars…very sad. How do you help your client if you don’t understand their needs? I feel very bad for elderly that don’t have family around all the time to oversee the care they are receiving. – Terry F.

Caregivers who are inexperienced in this field leads to abuse because of the lack of understanding. And by abuse I mean unknowingly acting out towards the person with out intentionally meaning so. When a caregiver doesn’t understand and that caregiver starts to get caregiver breakdown, unintentional harm happens with out even realizing themselves they are doing it. I’ve personally have seen this happen way to many times. It’s a bad situation to both parties involved. – Kim S.

I hired caregivers to help with my Dad, and I was amazed at what they didn’t know about Dementia patients. I had to train them how to react, care for and converse with my Dad. – Patti K.

I take care of my Mum who has Alzheimer’s. I’m very glad I got trained in this area. It has been a stress saver. When I look at my Mum, I see the great honour I have been given to take care of her. – Melody F.

After what my nans going through on a so called dementia unit in a hospital, I think people need training. We have to go to the dementia unit and feed her everyday because they don’t have the patience. They have no idea at all. – Charlotte S.

Some comments have been edited for clarity and/or grammar.

Caring for dementia patients at hospitals – the key factors

Caring for dementia patients at hospitals – the key factors

The thought of going to the hospital can be very frightening and disorient for people suffering from dementia. The stay at the hospital could be for a short period, for instance, an operation or for a longer period due to a serious illness or accident.

Statistics show that people occupy two-thirds of beds are over the age of 65, and around 30% of them will have some dementia.

Since dementia patients have trouble understanding where they are; the confusion compounds if they are ever taken to a place which is unfamiliar to them.

This is why going to the hospital can be a very upsetting situation for them, and may even confuse them more than usual.

They may not understand where they are, as hospitals can seem very noisy for people with dementia. If you’re worried about taking your loved one to the hospital, you might want to check out these factors in the vicinity, to make the stay or visit as less cringe worthy as possible.

Staff who are skilled and have time to care

The staff should be well educated about dementia, and trained to handle the patient with care. Moreover, there should be an availability of specialised doctors and nurses for dementia, who can understand the disease and its conditions thoroughly.

The staff to patients ratio at the hospital should also be sufficient enough to support the complex needs of dementia patients.

Environment that is dementia friendly

Due to the compound nature of this disease, the kind of environment that a patient is kept in plays a significant role, and can have a lasting impact, both negative and positive on the individual with the dementing illness.

The hospital environment should be calm and should increase orientation, provide comfort and become familiar quickly. The lighting and floor should be fixated in such a way that it supports orientation and not disturb the patient visually.

For some patients identifying the bed, the area can be a lifeline, for this very reason the bed area should always be personalized with familiar items for dementia patients. Moreover, since mental stimulation is critical for a person suffering from dementia, the resources in the room should support activity and stimulation.

Care plans that are person centred

We are all well aware that the symptoms of dementia vary from one person to another; therefore, their care cannot be generalised. The hospital should ensure that the care for a dementia patient is based on the specific needs of that individual.

Their preferences and understanding of their abilities are crucial when developing a care plan. Moreover, to make the patient more comfortable in the hospital environment, family and friends should also be involved in the care plan.

Due to individual differences in the disease itself, the encouragement of social engagement and activities should be to an optimal amount; of course, the optimal amount also varies from one person to another.

Specialists should be present at all cost when devising the care plan; support from professionals can ensure that the individual with dementia is getting the right support.

Partnership with the caretaker

Adequate care of the patient acknowledges the needs of families and caregivers who have been helping the person with dementia since the very beginning.

Of course, the caretaker is often happily willing to assist the care of their loved one, but the hospital staff needs to take into consideration how they wish to be involved. Moreover, when it comes to decision making, the caretaker’s assessment in the decision-making process should always be considered.

This is especially important when hospitals are aiming to provide the right care to the person suffering from dementia.

Families sometimes hold valuable information that can help the staff get a proper assessment of the disease and provide care which meets the exact needs of the individual.

The care of dementia patients is ever changing and unique. Each family with a dementia patient may have special needs that are entirely different from another family with a member with the same illness. Hospitals, which take into consideration these four factors and understand the caretaker should consider the uniqueness of the patient for their loved one suffering from dementia.


ALMA CA– USEY

Alma Causey is a blogger by choice.  She loves to discover lives and world around her. She likes to share her discoveries, experiences and express herself through her blogs.

Find her on Twitter:@Almacausey

Assisted Living Residents With Dementia Prone To Abusing Others, Study Finds

Assisted Living Residents With Dementia Prone To Abusing Others, Study Finds

Assisted living residents who abuse other residents or staff are likely to have dementia or severe mental illness, afflictions that pose unappreciated risks in facilities occupied by vulnerable elderly adults, a new study reported.

That abuse can include physical, verbal and sexual incidents, according to a study published online last month in the Journal of Applied Gerontology. Other studies have examined resident aggression in nursing homes, but the authors said few have explored the problem in assisted living.

“Resident aggression and abuse in assisted living facilities is prevalent and warrants greater attention from policy makers, researchers and long-term care providers,” the researchers said.

The study examined data collected in a 2010 federal survey in which facility administrators were asked about instances of aggressive or threatening behavior by residents in the previous month, among other questions.

Gilbert Gimm, the study’s lead author, said he was surprised to discover how prevalent resident aggression and abuse was in assisted living. Older residents’ frustration with their declining ability to care for themselves might be a factor that leads them to abuse others, he said.

In a national sample of 6,848 residents at least 65 years old, Gimm and two collaborators found 7.6 percent of residents had engaged in physical aggression or abuse toward other residents or staff in the month before the survey. Verbal abuse or aggression had been shown by 9.5 percent of residents and 2 percent had taken part in sexual abuse toward residents or staff, according to the study.

Of the residents linked to aggression, those with dementia were five times more likely to engage in physical abuse and those with severe mental illness were three times more likely to take part in physical abuse, researchers reported.

Male residents also more often engaged in physical abuse than female residents, they said.  Residents with severe mental illness were three times as likely to engage in physical abuse, verbal abuse and sexual abuse.

Researchers said their estimates might be low because resident aggression that happened out of staff members’ sight was not captured in the federal survey.

Elderly people often enter assisted living when disabilities and illnesses compromise their ability to live alone safely. Once they enter a facility, cognitive impairment, behavioral issues or physical limitations can leave them vulnerable to mistreatment.

Resident aggression against fellow residents leads to injuries, physical pain, depression, anxiety and increased risk of death, according to earlier research.

When assisted living residents are seriously injured, they may be hospitalized or moved to a different location in their facility, but both can be highly disruptive for seniors who don’t cope well with transitions, Gimm said.

People with dementia show memory loss, and have difficulty communicating and controlling their behavior. The condition has been found to make them aggressive and unable to recognize when they harm others, factors which the study said may contribute to the prevalence of abusive behavior. Earlier research cited by the authors found that 42 percent of assisted living residents in the U.S. have dementia in some form.

People with dementia can be unnerved by new situations, like a staffing change. Anything can seem unfamiliar to those suffering from short-term memory problems. Their fear of the unknown may cause them to lash out, trying to fight back or flee, said Gimm, an associate professor in the Department of Health Administration and Policy at George Mason University in Fairfax County, Va.

The Applied Gerontology study said increased training is needed for staff and caregivers to detect and manage residents with dementia and mental illness.

Family members should look for assisted living facilities that have separate units for dementia patients with specially trained staff who can spot and manage the early warning signs of aggressive behavior, Gimm said.

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

By Rachel Bluth

Dementia caregiving: Staying in the ‘okay’ part

Dementia caregiving: Staying in the ‘okay’ part

Confession: I am a caregiver, and I have no idea what I’m doing.

In the blink of an eye, I have shifted from a career as national vice president of sales to suddenly becoming the sole caregiver for my mother, who lives nearly 3,000 miles away. While I’m fortunate she doesn’t need daily care just yet, the travel and time spent away from my home, friends and family takes a toll.

My mother has been silently suffering from dementia for the past few years, I learned, as I began to spend more time with her. And she’s aware that she’s slowly slipping, but simply refuses to acknowledge or understand why, because of her religious belief in faith healing. Any type of disease — let alone the dementia that has her in its suffocating grip — is the topic we never talk about, the proverbial elephant in the room. For her, to acknowledge dementia would be to admit that it’s real and ultimately, to believe that God’s plan has been altered.

This was the religion of my childhood. I grew up in the house on the island where my mother still lives, attended Sunday School at the church where my mother still goes. Life in this small island community isn’t much different from how it was forty some-odd years ago before I left the church and my mother for another coast three thousand miles away.

My own journey was not without darkness and depression. Successful career aside, I struggled with my own demons, finally surrendering to sobriety after many years. My life changed dramatically: relationships were rebuilt, promotions achieved, a supportive and caring new husband came into the picture. The short trips I took back east to visit my parents continued. Not too long ago, I was faced with the startling reality that my mother was going to need more help. And, as the only child, I bore that responsibility. So I stepped down from my twenty-five-plus year executive career and stepped up to challenge of caregiving.

For months, the task seemed daunting. Difficult. Depressing. Discouraging. Draining. It was easy to be resentful; much harder to be compassionate. Yet a funny thing happened: the more time I spent with my mother, the more I realized how much we could both learn together. Rather than remain detached and angry, I reached out to other caregivers. Through online support groups, I discovered others who felt as I did. Instead of isolation, I reconnected with the community of my youth and through volunteering, became involved with local senior programs. As I peeled off the layers of dismay, I discovered patience, love and true empathy for my mother and others suffering from dementia.

“Try to understand what she’s going through,” said a long-time friend who lost her mother to Alzheimer’s. The simplicity of this wise advice was astounding. I put myself in mom’s shoes and walked a thousand miles. I saw that the corporate knowledge I’d collected over the decades of my working life could actually be applied to many of the situations I encountered in my caregiving life: practicing teamwork, multitasking, celebrating accomplishments, achieving goals. I ran this new life like a business, but with a newfound patience. And with a heart.

As the seasons changed, so did my outlook. Winter turned to spring: bleakness gave way to renewal. We placed mom’s husband in an Alzheimer’s home; I helped her live on her own again. The entire summer I spent with her became more about celebrating the glory of the outdoors than my initial plan to observe the progression of her dementia. Together, we took walks along the beach, picked bouquets of violets and daisies, made blueberry pies. The glory of autumn in New England brought foliage viewing drives and homemade applesauce from our backyard orchard. I returned for the month of December, and we decorated the house, baked Christmas cookies for the neighbors and spent our first Christmas together in more than thirty years.

My life as a caregiver is not perfect. My overachieving “Type A” personality struggles with being unable to commit to anything but being there for my parents. I am never sure which side of the country I’ll find myself in. So I opt for volunteering over a paid job. Embrace the time I am on the left coast with my ever-so-supportive husband, pets and friends. Run short races instead of marathons.

Along the way in this new journey, I am learning to accept things — and people — the way they are. I am trying to understand, not to be understood. I’ve replaced problems with solutions. I give back, offering my own caregiving tips and lessons learned to other caregivers. I remind myself of my husband’s wise words, when I told him I was half-stressed, half-okay: “Stay in the okay.” And I remember to cherish, not dread, time with my mother, who, it turns out, is really not so different than I am.


For more tips on caregiving for people with dementia and Alzheimer’s check out these informative caregiving sites and blogs:

  • AgingCare.com: online caregiver support
  • Caregivingmadeeasy.com: Helpful tips and hints for caregivers of elderly
  • Caregiverwarrior.com: caregiving stories and tips for caregivers of dementia patients
  • Dementia Challengers.com: written by caregivers sharing their experience
  • Firstat.com: information on home health care services for elderly
  • Gettopical.com/caregiving: advice and encouragement for caregivers of dementia patients
Unexpected Gifts from My Journey with My Father’s Dementia

Unexpected Gifts from My Journey with My Father’s Dementia

Unexpected Gifts - Front Cover - Hi Res copyExcerpt from Unexpected Gifts: My Journey with My Father’s Dementia, the following is the preface of the book.

My dad, Reuben Soldinger, was ill for nearly two years. His mind was confused about many things. Sometimes he thought he was at a hotel, not in a nursing home. Often he didn’t recognize my mother. Some days, he thought his son was his brother. But he was so much more than his forgetfulness. He was clever. He maintained a sense of humor. He still had a sense of amazement. He remained engaged in life.

His confusion defined his existence. He knew he was confused at least half of the time and wondered what he could do about it. He looked for the train, or he tried to do his job, or he gave a speech. But confusion was where he lived. He didn’t know his age, the year, or his surroundings, but he did know that he could still have an impact on things. He knew it until his last days.

On this path he went forward with his heart. His mind no longer shielded him from feelings that he didn’t want to face. Every emotion was authentic. There was truth in his interactions. Each moment was new, but it was also full of love, anger, or fear, and he had to travel through it.

Through this journey with my father I have been transformed. I walked the narrower path of being awake to the present moment. Before his illness, I had a very good relationship with my dad. Yes, it was laced with dramatic strife in my teenage years, miscommunications as adults, some disagreements and sometimes a lack of real understanding; but mostly he was my primary source of support and my loving guide for how to be in the world. Our relationship, as is true in most relationships, relied on past history for understanding each other. As this information became less available during his illness, I had the opportunity to see and hear him differently. The pain and the tragedy of it all was there, but so was the heart’s ability to love, and the ability to see and hear his spirit, and this became the avenue for many unexpected gifts.

Dad changed. And he grew. Growing happens all throughout life, even at the end. I recognized his spiritual and emotional shifts and asked many questions along the way. How does one walk with someone who doesn’t function within the social norms? How do I see to the needs of my beloved parent? And most important, how can I accompany him?

Accompanying Dad on this journey has been an honor. This writing is a tribute to who he was as a human being and a tribute to the growth that happens in every moment of life.

Thank you, Dad.

Eve Soldinger is an Acupuncturist and Medical Qigong Therapist based in Washington, DC. Her bestselling memoir, Unexpected Gifts: My Journey with My Father’s Dementia is accompanying other caregivers during this challenging, and sometimes beautiful, journey.

Sparking connections: Ways to find beauty, joy and meaning in dementia

Sparking connections: Ways to find beauty, joy and meaning in dementia

Carrie Clarke is a former traditional signwriter who has worked for many years in the arts and health field. She is currently an Occupational Therapist working with an NHS inpatient unit for people with dementia in Exeter, UK; she is also a practising artist.

In 2010 she led a team in developing an innovative ‘Enhancing the Healing Environment’ project to transform an inpatient hospital environment for people with dementia. The project had at its heart a participatory approach, consulting with people living with dementia, their carers and staff, and incorporating their views and ideas into the design. These individuals were also actively involved in creating some of the outstanding and moving artwork for the new unit.

As an Occupational Therapist, the fundamental inter-relationship between people, meaningful occupation and the environment is central to Carrie’s work. To this she brings an aesthetic eye and a strong desire to raise awareness of the impact of environments on the physical, mental and emotional well-being of people living with dementia.

Carrie is passionate about finding new ways to create a more sustainable, respectful, meaningful and engaging way of being with people with dementia, that will support a better quality of life based on a sense of connection to place, to self and to others. For this to happen, new relationships and partnerships need to be forged that cross conventional boundaries, encouraging creative and innovative approaches to one of society’s greatest challenges — that of ageing and dementia.

The ‘EHE’ project was recently ‘highly commended’ in the Arts and Health South West Awards 2012, and Carrie’s work won an NHS award for ‘Change and Innovation’ in September 2012.

Music makes dementia patients alive

A professional flutist, Toshiro Mitsutomi, developed 3 tips to evoke dementia patients’ memory and their life successfully during his 40years career: 1)play close 2)play at the same eye level 3)looking in the eye while playing. He actually demonstrated it by performing his original composition in the TED audience.

Music saves health care – Musicians play the role of nurse through the practice of music.

Toshiro established the female orchestra “flumus” for the purpose of supporting female artists. He founded the Music Hope project which implements a variety of workshops that strengthen the ties of “music”, “body”, and “heart” through playing music, dancing, exercises, and breathing in order to provide health support and create a societal contribution for musicians and mainly for municipal facilities such as medical institutions, nursing homes, schools and educational institutions. They also perform concerts for all of the caregivers and nurses, and continue to support people with the infinite power of music.

Dementia transformed: Flourishing people with love

June emphasized that families need to work alongside nurses to care for their relatives with Dementia.

Professor June Andrews FRCN is Director of the Dementia Services Development Centre at the University of Stirling. She is a Fellow of the Royal College of Nursing and has received a Lifetime Achievement Award from the Chief Nursing Officers of the UK.

She has also been recognised with the prestigious Robert Tiffany International Award and the Founders Award of the British American Project. She headed the Royal College of Nursing in Scotland, and directed the Centre for Change and Innovation within the Scottish Government in addition to her career in the NHS. She advises health departments and service providers around the world and is the author of Dementia; the One-Stop Guide.

Health care costs for dementia found greater than for any other disease

Health care costs for dementia found greater than for any other disease

NIH-funded study examines medical, care costs in last five years of life.

In the last five years of life, total health care spending for people with dementia was more than a quarter-million dollars per person, some 57 percent greater than costs associated with death from other diseases, including cancer and heart disease. The new analysis, appearing in the Oct. 27, 2015, online issue of the Annals of Internal Medicine, estimates that total health care spending was $287,000 for those with probable dementia and $183,000 for other Medicare beneficiaries in the study.

The analysis was funded primarily by the National Institute on Aging (NIA), part of the National Institutes of Health. Additional support was provided by the American Federation for Aging Research.

Amy S. Kelley, M.D., of the Icahn School of Medicine at Mount Sinai, and colleagues analyzed data from the Health and Retirement Study, a nationally representative longitudinal study supported by the NIA and the Social Security Administration, as well as linked Medicare and Medicaid records and other data. They calculated the “social” costs of all types of care for 1,702 Medicare fee-for-service beneficiaries age 70 and older who died between 2005–2007. Patients were divided into four groups: those with a high probability of dementia; those with either cancer or heart disease; or those with another cause of death.

The researchers calculated costs from Medicare, Medicaid, private insurance, out-of-pocket, and informal care over the last five years of life. Specific categories of spending included insurance, hospital, physician, medication, nursing home, hired helpers, in-home medical care and other expenses. The investigators also measured out-of-pocket spending as a proportion of household wealth.

“This complex analysis lays out the significant health care costs to society and individuals in the last five years of life,” said NIA Director Richard J. Hodes, M.D. “It provides an important picture of the risks that families face, particularly those with dementia and those who may be least able to bear major financial risk. Such insights are critically important as we examine how best to support the aging of the U.S. population.”

While average Medicare expenditures across all four disease categories were similar, almost all other costs were consistently higher for people with dementia. Medicaid — the federal/state program that supports medical and long-term care for people with limited funds &mdash expenditures for people who died with dementia averaged $35,346 vs. $4,552 for those without dementia. The dementia group had significantly higher enrollment in Medicaid at the start of the five-year study period (21 percent) than those who died from cancer (8 percent), heart disease (8 percent), or other causes (13 percent). Enrollment in Medicaid during the last five years of life also increased for those with dementia (27 percent) compared to those with cancer, heart disease and other causes (12 percent, 15 percent and 15 percent, respectively).

For families, out-of-pocket spending for those with dementia was $61,522 compared to $34,068 for those without dementia. Informal care costs were estimated to be $83,022 for people with dementia vs. $38,272 for those without dementia. In addition, out-of-pocket spending as a proportion of total household wealth five years before death was significantly higher — median of 32 percent for dementia and 11 percent for other diseases. For African-American households the median out-of-pocket expenditure was 84 percent of household wealth for those with probable dementia.

The gap in the financial burden between those with and without dementia was larger among those who were unmarried, African American, and had less than a high school education. Single women with dementia also incurred more out-of-pocket costs than married women with dementia.


About the National Institute on Aging: The NIA leads the federal government effort conducting and supporting research on aging and the health and well-being of older people. The NIA provides information on age-related cognitive change and neurodegenerative disease specifically at its Alzheimer’s Disease Education and Referral (ADEAR) Center at www.nia.nih.gov/Alzheimers For more on health and on aging generally, go to www.nia.nih.gov. To sign up for e-mail alerts about new findings or publications, please visit either website.

About the National Institutes of Health (NIH): NIH, the nation’s medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

4 myths of dementia

Kate Irving, who has spent the last 20 years of her career working with people with Dementia, is clinical lead in the Memory Works clinic in the Healthy Living Centre, an initiative to decrease stigma and increase access to information about cognitive health promotion for all.

Kate talks to us about Four Myths of Dementia. She dispels the common myths of dementia by explaining the truth of dementia.

Kate is currently working in Dublin City University, where she is a senior lecturer in Mental Health Nursing and teaches a range modules. Previously she worked at University College Dublin as a lecturer. She completed her PhD in 2001 at Curtin University of Technology, Western Australia. Her thesis was entitled: Case studies in restraint use. Kate is a partner on an Erasmus programme ‘Positive about Dementia’ to establish a European, multidisciplinary Masters in dementia. Kate is the Lead in Partnership with Mary Manning in the HSE partnership project Dementia Skills elevator which develops capacity to care for people with dementia in communities and workplaces.

Kate is leading a national dementia training initiative: Dementia Skills Elevator, which aims to develop capacity in services and communities to better support people with dementia and their families.

Follow Kate on Twitter: @dementiaelevate

Dementia also takes a toll on unpaid caregivers

Dementia also takes a toll on unpaid caregivers

Unpaid caregivers and family members spend more than 100 hours a month, on average, assisting elderly people with dementia who live in the community and not in residential care or nursing homes, according to a new study. The time commitment was significantly higher than for similar caregivers who helped elderly people without dementia, who themselves put in an average 73 hours each month.

Overall, people with dementia make up 10 percent of noninstitutionalized adults age 65 or older, but they account for more than 40 percent of unpaid caregivers’ time.

“That overall picture of the footprint of caregiving to older adults that is attributable to dementia is the study’s most important message,” says Judith Kasper, the lead author of the study and a professor of health policy and management in the Johns Hopkins Bloomberg School of Public Health.

The study, published in the October issue of the journal Health Affairs, analyzed 2011 survey data from the National Health and Aging Trends Study and the National Study of Caregiving. It included 2,423 adults age 65 or older who were not in nursing homes who received help with routine activities, and 1,924 family members or others who provided unpaid help to them.

Of 37 million people over 65 in 2011, 3.6 million had dementia, the study found. Seventy-seven percent of those with dementia received routine help with household tasks or personal care such as bathing and dressing. Only 20 percent of the 33 million people without dementia received similar help.

As people live longer, the number with dementia will increase, further straining caregiving resources. About 1 in 9 people over 65 has Alzheimer’s disease, the most common form of dementia, according to the Alzheimer’s Association. By the time they reach age 85, about one-third of people have Alzheimer’s.

Medicare generally covers home health services only if they are related to medical care. It doesn’t cover the routine personal care and other services that people with or without dementia may need on an ongoing basis.

More than 90 percent of the caregiving hours that people put in were for people in a community setting.

However, caregivers who helped someone with dementia in an assisted or independent living facility also put in significant time, 45 hours a month, on average.

Even though they provided fewer hours of care, “it’s interesting that you still found a high percentage of caregivers who were in contact with people when they were in residential facilities,” Kasper says.

By Michelle Andrews

Images of dementia

Magnetic resonance images are revolutionizing dementia diagnosis because of the use of computers for their analysis. The brain degeneration that causes failure of memory can be detected before symptoms arise, which raises new perspectives for treatment.

Richard Frackowiak is head of the Department of Clinical Neurosciences at UNIL–CHUV. His interest is in human brain structure and function relationships in health and disease. He has won the Ipsen, Wilhelm Feldberg and Klaus Joachim Zulch prizes. Formerly Foundation Professor of Cognitive Neurology at University College London, Director of the Department of Cognitive Studies at the Ecole Normale Supérieure Paris and Vice-Provost of UCL., he founded the Wellcome Department of Imaging Neuroscience (FIL) in 1994. MA and MD Cambridge, DSc London University, he has an honorary doctorate from Liege University and is a Fellow of the Academies of Medical Sciences of the UK, France, Belgium and Europe and a foreign associate of the Institute of Medicine USA. He is also scientific advisor to the Director-General of Inserm.

No place like home for dementia care

No place like home for dementia care

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.

Resources

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.

Respite Care

 


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.

Help for ALZ & dementia care

Help for ALZ & dementia care

As we continue to celebrate Grandparent’s Day, we’re tackling an issue that impacts many grandparents and their caregivers: Alzheimer’s Disease.

Taking care of yourself while you’re caring for someone else isn’t optional. In fact, 40% of ALZ caregivers die before the person they’re taking care of. The best way to care for your loved one is by caring for yourself, too. Here are our top tips for how to continue caregiving without paying the ultimate price.

Need specific advice or have something to share? Connect on our forums.

Tips & Information

11 tips from other caregivers

Harriet tackles anticipatory grief

Phyllis shares the Uber-Caregivers top 5 tips for avoiding chaos

Barbara shares this tip for responding to Alzheimer’s behavior

Michael investigates the cause of Alzheimer’s disease

Michelle talks about sundowning and how to manage it

Rick discusses the best places to find caregiving resources

Shoshanna provides tips on how to get ready to care for someone with memory impairment

Carol shares home safety tips

Resources

ALZ Live has guides for navigating the healthcare system in the US and Canada. They have much more information available on their site.

David found voice reminders helpful for managing his father’s medications

Project Lifesaver helps manage wandering

Aging Care has a free guide to being an ALZ caregiver

StoryCorps has a guide for creating your own oral histories. You can listen to some of our favorites from their collection on memory loss.

What it’s like

Phil shares the story of caring for his mother, who has Alzheimer’s disease

Em tells Allie about FTD

Art shares the story of caring for his father, who had dementia

Julie talks about Alzheimer’s caregiving and isolation

Vince shows us what a day in the life of an ALZ family is like in this fantastic video

Brittany shares how caring for her grandparents changed how she views marriage

Blake ruminates on Ed Sheeran’s song about ALZ

Theresa shares a poem about ALZ

Rick lists 7 things not to say to an ALZ caregiver

Yuko likes to relieve caregiving stress by drawing

Vicki talks about overcoming caregiver guilt

Phyllis explores the true cost of dementia

Heather discusses her fear that her mother will get ALZ

11 Tips for taking care of someone with Dementia/Alzheimer’s

11 Tips for taking care of someone with Dementia/Alzheimer’s

What are some activities for dementia and Alzheimer’s patients that have worked for you?

  1. Teepa Snow.” – Julie R. teepa-snow

  2. “As Dad remained quite mobile, one of my favourite activities to do with him was to go for walks together. Another common pastime was reading out loud to him, something he did for my sisters and me as a former University English Professor.” – Rick L.
    silhouette of elderly man with cane walking

  3. “Traveling the world on Google Earth.” – Alicia W.picture of a pile of mini globes

  4. “Making short videos on my computer and singing or just saying ‘hi’ to people.” – Katie S.picture of man skyping and waving hand

  5. “Soft sing alongs worked beautifully for my mother. She engaged and tried to sing. I even brought the Episcopal church hymnal with me once and flipped through the pages to remind me of her favorite hymns.” – Molly D.old woman clapping with her young granddaughter

  6. “Something he did as a young boy – marbles, checkers, or cards.” – Kim R.close up of a colorful set of marbles

  7. “Sorting – nuts, bolts, coins.” – Sandra O.shutterstock_280535489

  8. “Assembling something.” – Rhonda M.minimalist image of colorful building blocks

  9. “Mom likes current events or crossword puzzles.” – Julie H.closeup of crossword puzzle

  10. “With the help of a home aide, my father-in-law and I worked for months to create a rug for his great grandaughter Ava. When we brought out the materials, he became fully aware of his surroundings and why he was making it.” – Bobbi C.picture of great grandaughter with mom and great grandfather

  11. “When my father-in-law’s memory was faltering, we’d take him for a drive in the country to see a wind farm. This unusual ‘field trip’ garnered Dad’s attention. ‘There are so many windmills!’ he’d exclaim. “And they’re all so big!” – Harriet H.image of windmills in a field

Photo credit of Teepa Snow via Alzlive

Dementia Carer Voices: The Caring Experience

Dementia Carer Voices: The Caring Experience

Scotland’s Dementia Carer Voices conducted a survey in 2013 and 2014 to capture the experiences of people caring for someone with dementia. Here’s what I found the most interesting:

79% of carers said other people didn’t understand what they’re going through. That’s why online communities of caregivers are so important.

The support from other carers has been my lifeline

Not only are online communities critical for bringing caregivers together to be able to talk freely, nearly 40% of carers said they found critical information from caregiver support groups.

As of yet, the only real support I get is from strangers who I find online who are going through the same thing that I am

Carers spoke of being exhausted, both mentally and physically, feeling isolated, feeling guilty, and having trouble dealing with feelings of guilt and loss.

Are you becoming a dementia carer? The advice experienced caregivers give is:

Join a support group, be good to yourself, and get outside help immediately so that your loved one will get used to it from the start

You can read Tommy’s blog about the report or read the full report and view the survey online [PDF].

Altering the way we communicate for someone who is living with dementia

Altering the way we communicate for someone who is living with dementia

peronal_communication_largeDid you know that spoken words only account for 7% of communication?  The remaining 93% of communication is conveyed through body language, vocal tone and pitch.  If you are surprised by this information you are in good company – most people don’t realize this.  Human brains process communication in milliseconds so we aren’t aware this process is even occurring.

Communication style becomes especially important when there is someone in your life that is living with dementia.  Communication often becomes one of the most challenging aspects because we try to use the same communication technique with someone living with dementia as for those who don’t have this brain impairment.  Understanding a few basic elements of communication can make a positive difference.

  1. Remember that 93% of communication is non-verbal.  Use this dynamic effectively to help the person with dementia be better able to process what you are saying.  Here are some tips:
    • Stand at eye level in front of them so they benefit from seeing your body language and facial expressions.  People likely don’t realize how often they speak behind or besides someone.  If that person has dementia the lack of visual cues hampers their ability to process information.
    • Slow your speech down because their brains process information more slowly.
    • Phone calls are especially challenging for someone who has dementia because the only communication cues they receive are words (7%) and vocal tone and pitch (38%).  Limit phone conversations to a minute or so and say something positive like, “I was thinking of you and just wanted to call and say hello.”  The expectation of being able to have a meaningful two-way phone conversation is not realistic.
    • Consider using Skype or another one of the visual software methods on a computer, tablet or iPad to communicate.  This provides the opportunity to see the person speaking, which greatly enhances their ability to process what is being communicated.
  1. Take time to listen to the person’s response giving them enough time to respond.  Don’t interrupt them while they are speaking.  If they are especially stuck on a word, kindly supply the word and see how the individual reacts.  If they don’t appear to want the help, let them manage on their own.
  1. Ask one question at a time and ask questions that require simple or yes or no answers.   For instance, “Do you want scrambled or fried eggs this morning?” instead of “How would you like your eggs this morning?”
  1. Where possible, give visual cues about what you are communicating about.    
  1. Use touch as a way to communicate.  Touch is a powerful communicator.  When used positively touch can convey caring and warm feelings.  It only takes a moment for a light touch or pat on the shoulder, a kiss on top of the head of someone sitting, or a gentle hand squeeze.
  1. Smile often, not only because it conveys warmth and caring, but also because smiling can make you feel better too. 
  1. Spend time together in companionable silence.  It can be exhausting for someone living with dementia to continually process communication.  Sit across from the person or at 90 degrees so they can easily see you.
  1. Lastly, the most important action you can take is to be aware of how you are communicating and whether it is having desirable results such as smiles, nodding, and looking contented, happy, or relaxed.   If not, review how you were communicating to see if you should adjust an aspect of your technique.
A Congressional caucus, trauma recovery, new perspectives on dementia, and other caregiver news

A Congressional caucus, trauma recovery, new perspectives on dementia, and other caregiver news

Increased support

There’s big news for family caregivers in the US – a congressional caucus has been formed to focus on informal caregiver issues. Singapore is ahead of the game, as they’re contemplating providing direct support to family caregivers. Taiwan is loosening their rules for professional caregivers. There’s a lot of potential for improvement in care.

If you’re struggling to balance family caregiving needs and a career, maybe it’s time to share this article with your boss.

Professional caregiving in the news

Here’s a heartwarming story – a caree saved the life of her caregiver. Professional caregivers around the US are fighting to raise the minimum wage to $15/hr. While many family caregivers argue that they can’t afford to pay that, professional caregivers ask how they’re expected to support their own families on less.

Recovering from trauma and finding joy

There’s more evidence that journaling about a traumatic or stressful experience helps you move past it. Other things that can make you happier – video games and these 7 apps. You can also challenge yourself to stop complaining and train yourself to focus on the positive.

Dealing with dementia

Have you ever wondered what it’s like to have Alzheimer’s? Researchers are increasingly encouraging dementia caregivers to keep troublesome dementia behaviors under control without medication. Do you think medication can really be eliminated? We certainly know dementia can cause very problematic behavior. Do you agree with Marie’s list of the 3 most difficult situations Alzheimer’s caregivers face?

Who gets to decide?

The courts have ruled that Canadians have the right to assisted suicide. The Canadian courts also think that a woman with Alzheimer’s is making a conscious decision by continuing to eat.

Healthcare odds and ends

Can’t keep track of the Obamacare court case? The New York Times catches you up.

Those of us who appreciate having antibiotics will be glad to hear that McDonalds will no longer be buying or serving chickens fed antibiotics with no medical purpose. Especially since the things we do to avoid germs aren’t very effective.

Heroin deaths have just about tripled since 2010 – and nearly 80% of heroin users started with prescription opiates.

Debating starting an exercise program? A study conducted with twins – one of whom exercised, one who didn’t – supports the idea that there are myriad health benefits.

Wondering why your foot keeps falling asleep? Here’s the scoop.

Can live-in home aid help ease dementia care?

Can live-in home aid help ease dementia care?

34 % of adults in the United Kingdom fear getting dementia, a neurological disorder that included loss of memory and speech, later in life, according to a study done by The Live-in Homecare Information Hub. However, 52% of adults are more comfortable talking to others around them about their fear and how to manage it. Dementia has become commonplace disorder for the elderly, with one well-known form being Alzheimer’s.

According to findings done by the organization No Place Like Home, loneliness can be a significant contributing factor for people developing Alzheimer’s with those who reported being lonely developing a high incidences of the disease up to twice those who do not consider themselves lonely. In the UK, the total number of people with dementia has been predicted to rise to 940,110 by 2021 and 1,735,087 by 2051 – an increase of 38% over the next 15 years. This also indicates that by the year 2037, the number of caretakers – paid and unpaid – will have to rise to up to nine million (or more) to keep pace with the rising number those in need of elder care.

9 million caregivers in the UK by 2037
Due to this, more needs to be done to ensure that people dealing with this debilitating disease, as well as others dealing with similar ailments, are properly cared for. 97 % of adults report that they do not want to end up in a nursing facility given the negative reports regarding them. In addition, 78 % are worried that they would be resentful to a family member who needed additional care. 65% worried that the situation could cause ‘divide our family or cause relationship problems.’

Some proposed solutions include live-in homecare where a nurse or live-in caregiver could provide round-the-clock care for a dementia or elderly patient. Many would be specifically trained to cope with particular conditions like dementia, Parkinson’s, stroke, MS or palliative care. This could reduce the risk of loneliness for the patient as well as alleviate the bed shortage that the current hospital system faces.

67% of people worry elder care disagreements will divide their family

The true cost of dementia

The true cost of dementia

Today I realized one of the worst parts about watching my Mom decline with this dreadful disease, Alzheimer’s or dementia. Its not that we must care for her, its not that she doesn’t know where she is, but worse than all of that, its that it has robbed me of my memories too in a different sort of way.

My mother used to be a vital, energetic, witty and fun person. Its been over 5 years now of watching her decline, changing diapers, feeding her, lifting her up, putting her to bed and sitting by her side while she mumbles incoherently and asks to go home or calls for people who have been dead over 50 years. As hard as I try, I simply cannot remember how she used to be anymore. I see pictures and old movies of her and know that is her, or was her, but in my mind, I can no longer hear her voice and recall how she used to be. Its like Alzheimer’s has hit me too.

My father died recently and it was very quick and sudden. I still hear his voice and feel his energy when I think of him. I guess its because that is who he was right up to the end. But Mom, she hasn’t been Mom for a long time now and when I think of her I can only recall who she is now.

Don’t get me wrong, I still see the images of the old her, but my memory can no longer recall or feel her energy and heart in my mind; the way she used to sound and how she used to be. It makes me sad because then I realize, I lost her a long time ago.

Why isn’t it easier for people to die in this country? My mom said a million times how she never wanted to live this way and yet here we are her living the live she most dreaded and feared. Its cruel and torturing. It robs them and it robs us and it is all for nothing. The only benefactors of this disease are the medical communities and the pharmaceutical companies. People need to be able to have a choice, before it is too late to make one.

I hate Alzheimer’s for what it has taken from Mom and from me and from all my family.

by Phyllis Barcena Miller, originally published on our Facebook page.

With cancer and dementia, the caregiver must be hyper-vigilant

With cancer and dementia, the caregiver must be hyper-vigilant

Focusing on healing one condition is tough enough, but two? This can feel about as hard and confusing to the caregiver as it is to the patient.

For example, dealing with cancer combined with dementia can present a host of conflicts, complications and questions. Unfortunately for the patient, recent research by the Moffitt Cancer Center in Tampa, FL indicates a dramatic difference in the life expectancy between patients with cancer alone and those with cancer combined with dementia. People with both cancer and dementia die much sooner than those with cancer alone. The accounts for this are unclear and speculative. One explanation is that there’s often an uncertainty with diagnosing and treating dementia in the first place and symptoms of dementia often mask other ailments. It could also be that people with dementia simply aren’t given cancer screenings as often they could and therefore the cancer goes undetected or untreated altogether. Somehow, the dementia can enable medical professionals to miss the cancer.

For the caregiver, this presents added challenges. Under these circumstances, care includes becoming an advocate for the patient by staying on top of doctors and making sure check-ups are handled regularly and thoroughly and that proper treatments are administered. Since the patient may not be able to speak for themselves or make their symptoms clearly known, caregivers are on heightened alert to spot signs of trouble and to speak on behalf of their loved ones. Of course, this leads to added stress for the caregiver. What to do?

Author and caregiver advocate, Linda Burhans laments that there’s not much out there by way of information on how to deal with cancer coupled with dementia. So she suggests that caregivers seek out and get involved in a support group, either online or in person. The idea of having a sounding board or just knowing that you’re not alone can be invaluable enough. But researchers from the University of Michigan School of Nursing found there’s more to it. Their 2012 study revealed that caregivers are more likely to have reduced stress, improved sleep, better immune function and overall physical health by being involved in an established caregiver support organization. To a larger extent, so-called “caregiver interventions” can also arm the caregiver with valuable coping skills, knowledge and a better quality of life, overall. This kind of empowerment likely results in better care of the patient and ultimately in their improved physical and mental health.

These findings are supported by the NYU Langone Medical Center, which found that support groups reduce a caregiver’s depression level, while at the same time increase their ability to react effectively to problems. Social groups, where one could gain information, learn how to recognize warning signs and manage expectations, talk to doctors, practice nursing skills, learn new ways of handling tasks, and receive feedback are most meaningful. It improves a caregiver’s self-esteem and can also help during time of bereavement. The support a caregiver receives, in effect, makes them more resilient.

Researchers agree that more standards of care protocol need to be implemented when it comes to dealing with dementia paired with cancer. As medicine advances to where we keep getting older and older, it stands to reason that more of the elderly will unfortunately suffer through both cancer and dementia together. If there’s a lack of understanding of how to deal with this now, we can hope that caregivers will have a blueprint in the future. For now, find help and strength in the form of support groups, spiritual wellness groups, friends and online resources that deal with one condition or the other (such as The American Cancer Society and Alzheimer’s Foundation of America) and stay informed on the latest treatments available. It is within every person’s right and dignity to seek and receive the best care possible. Every patient deserves it. And so do you.

SOURCES

Cancer and Dementia Together — a Deadly Situation, Caring.com

For Alzheimer’s, Detection Advances Outpace Treatment Options, New York Times

Resources for Seniors Suffering from Dementia and Cancer, eCareDiary.com

Behavioral and Psychosocial Interventions for Family Caregivers, American Journal of Nursing

Psychosocial Care for Family Caregivers of Patients With Cancer, Journal of Clinical Oncology

How effective are interventions with caregivers? An updated meta-analysis, Gerontologist

Translating an Evidence-based Intervention for Spouse-Caregivers into Intervention for Spouse-Caregivers into Community Settings, Dr. Mary S. Mittelman

Palliative care in dementia: issues and evidence, Advances in Psychiatric Treatment

Is caregiving an act of love or obligation?

Is caregiving an act of love or obligation?

We talk a lot about how fulfilling it can be to support a loved on, but we also discuss how difficult caregiving can be. Is caregiving something we’re doing out of a sense of obligation and duty, out of love for our caree, or a mix of both?

Caregiving is an obligation

Caregiving is an obligation for me. My daughter has a brain injury due to her own drug use. She’s hurtful and emotionally and mentally abusive to me and her kids that I’m also caring for. There are many days that I truly do hate her for the situation she’s put us in. My grandson will be 18 in two weeks and he’s moving out because of her, his mother. I don’t blame him at all. – DA

It was an obligation. Glad it is over now. Caring means you put your own life on hold, or try to lead two lives (and be expected to). It is not sustainable and leads to resentment. – VJ

Obligation in my case. If I don’t step up things don’t get done. It is especially hard for me because I have felt trapped throughout my life. It has never been about me. I resent that. I took care of my ex with cancer, then my daughter was diagnosed with autism and now mom has dementia. I have had to leave everything I worked so hard for because my brother can’t be bothered. – IN

I want to say both but more and more it is just obligation.
My mom makes everything so difficult with her self centered, controlling, hateful nasty attitude. Everything is a a demand to be done right now and to be done her way. My own adult children tell me it is time to tell her she has to go to a nursing home and leave her. – TK

Caregiving is an act of love

LOVE!!!! 18 years… my husband was shot in the head twice, he cannot walk, talk and eats through a g-tube. Definitely LOVE. Before his BI he loved me like nobody in this whole world has. – JJ

It’s an honor and a privilege to take care of my wounded veteran 29 yr old beautiful daughter. She is my hero. – KP

I take care of my husband because I dearly love him. Yes I do get tired; I do miss out on some things I’d like to do. Yet I don’t resent a minute of caring for him. My daughter stays with him one day a week and I go have lunch with a friend, get a pedi or just ramble around and I’m always happy to get home to him. – RH

It is a GIFT to give back to our loved ones. OH, it is not an easy journey but once you understand “they are NOT giving you a difficult time, they are having a difficult time” You begin to find the humor and share their journey with the love and respect your loved one deserves. At times, when I was so tired, frightened and feeling I was doing everything wrong. my Mom would SMILE at me, touch my hand and fill my heart with such Love. We took the journey together and shared so many wonderful adventures, long talks and much laughter and yes, tears too. I will miss her always and thankful for our special times helping each other. Life is a Beautiful Journey. – SM

Love, absolutely!! I am so blessed that I’ve been able to bring our son into our home, after some terrible occurrences at a nursing home, and to be able to assist and encourage him to reach the amazing ability level he’s reached!!! In those very brief and fleeting moments when I feel like ‘quitting’, my husband is always here to give me the little break I need. – VM

After 14 years, there’s as much love as there ever was, but there are days when I miss dreadfully the freedom and light-heartedness of my previous self. Filial piety is no easy thing. – CB

My son is only 11 and most likely will never speak or be independent. Right now it is love. But how will I feel in twenty years? Looking for guidance and advice from folks who have been doing this for a long time. – PC

LOVE!!!! When I start to feel lonely & sad for not being able to have or experience what my friends have, I get selfish & then it kinda feels like sort of an obligation. I’m the youngest & stayed behind to take care of Mom & Dad. I gave up grad school at USC, my career, getting married & having children. – RB

Caregiving is both an act of love and an obligation

Obviously both. And when I’m so tired a burden. But love wins out. Such a rollercoaster of emotion for me. – DR

It started out as love. My dad had Alzheimer’s late stage and my mom was starting to develop it. So I moved them into my house After 10 very long years my Dad passed and now it’s just my mom. I am exhausted beyond belief with no end in sight. I love my mom but it has quickly become an obligation. – NN

In the beginning, it was all love. After 12 years of anxiety and stress, it usually feels more like an obligation. – KF

An obligation brought on by love….my husband developed a brain disease that’s deteriorating his brain. I always had promised him I would take care of him as long as I could. I struggle everyday out of love and then those days I don’t know if I can continue. He has had strokes, has seizures, has developed kidney disease, vascular disease, lung disease and now our current dilemma of skin deteriorating on his bottom. Most of the time I want to give up but then I look at him and ask myself if the roles were reversed would he? I can admit, even with the help of a home aid and nursing visits, I am tired. – TM

I love caring for people but I’m also getting burnt out. I think if I was caring for a loved one it would be different. I am at a place where I don’t want to do this anymore. – AJ

Both, as much as I love him, it does feel a obligation sometimes especially when I can’t get any me time or am so tired i could scream. – KA

Mostly love, but sometimes obligation. I love my son (18 yrs, traumatic brain injury at birth caused by doctors). I have my days where it just feels like I’m on a treadmill, doing the same thing day in, day out. Being a caregiver is one of the hardest things I’ve ever done, but the rewards far out weigh the bad days. – GG

Both…But you are motivated by love even though you get tired of being judged so harshly by outsiders and family who truly don’t have a clue. They make it feel more like a burden and obligation. Many are just jealous and expect too much out of you for them which takes away from the one you are caring for and your own self care. – JD

Depends on the day and on the mood of the person you are caring for. It’s the hardest thing I have ever done. A child is one thing but an adult who is depressed and uses anger to mask is the hardest ever. – MR

Depends on time of day, what day of the week, how tired I am, how tired hubby is, if I’ve had respite…ideally I feel the love, in reality, it’s kind of brutal, watching the love of your life fade away, doing things for him he never would’ve wanted you doing. – PS

Mostly love, occasionally obligation but I asked for this. All those prayers asking for his life to be spared, asking for healing. I never asked that God take him home n release me from this journey. The next journey scares me more, the one where I learn to live without him. – VS

Both!!!! The hardest part of being a caregiver for me is watching my husbands health deteriorate. It’s also very hard not to get resentful for being put in the position of being a caregiver. Some days I feel like running away from the responsibility of it all. But somehow I hang in there and pray for strength to get through the next day., praying that it’s not as stressful as the day before. – RH

When I was caring for my Grandma, I loved her 100% of the time but she always made it feel like an obligation. Especially when she was verbally and mentally abusive. – PB

Both, for sure. As someone else said, it largely depends on the moment. When my sister is happy and being good, it’s pure love. Grumpy days feel like pure obligation. Though even then, love plays a role in order to dig up the patience needed to handle her. – AB

I’m starting to feel resentful because it taken away so much time from my son who is leaving for college in a few weeks and my husband who I have to leave at home as well . I love my Dad but he doesn’t appreciate the struggle it is …. but I’ll keep on doing it because he’s my dad and I promised my mother . – KB

Wow such a thought provoking question… my daughter is severely disabled and has major behaviors. Lots of people ask me when I will put her in a home and honestly I can’t even imagine her not in my life or my home… I know at times I grieve my life because I have absolutely no help and feel so isolated at times, but like I said I love her so much I can’t imagine her not being here. But I also feel as a mother it is my obligation… I definitely think sometimes it depends on the day and how exhausted I am feeling in the moment. I truly wish there was more support for parents that have none… my only option is out of home placement due to her behaviors. – JT

Both. I love my son but his behavior related to his TBI makes it a challenge some days. I never thought this was he would be spending his senior year in high school. – JN

Both….my mom passed away three years ago…I cared for her for over twenty years…she was sick n suffered with diabetes..kidney dialysis foot amputation etc….list just goes on and on…my dad passed seven years ago so that left me by myself to care for her..I loved her so much and miss her everyday..but wouldn’t want her back on this earth to suffer more…but also felt obligated to care for her because she cared for me and raised me…fed me changed me took care of me when I was sick..she didn’t abandoned me because she got tired or aggravated…she always was there for me…and there was no way I was there gonna abandon her either…so I felt both love and obligation…and id do it all again….❤ – VT

Both to me as well. As mom, I feel it is my obligation to take care of my son instead of allowing others to help. But at the same time I so love taking care of my son. Not many moms have their 21 year old kid at home and I have been so blessed that I can spend so much time with him!! – DA

Love that turned into obligation. Yes, the love is still there, however resentment has started to creep in. That is when I need to wake myself up, lean on our Father and realize that I know what I was getting into. I don’t blame him for all of this…just pray that things would be better so that I can be near my only son. I encourage everyone to look for the small blessings and never give up hope! – SA

Both. Although in many ways I feel it is my calling. My career was nursing, that was my passion. I was gifted with the opportunity to formally “RETIRE” from working with a full pension effective August 1, 2014. My mom was diagnosed with Double Pneumonia August 7, 2014. I struggled with being nurse and daughter until her passing from progressive decline this April 16, 2017. I am now caregiving my dad who has cognitive impairments. Although many challenges make each day a “new normal”. I find that my love for my family is what helps me to make wiser and healthier decisions. – KB

You want it to be love and being done out of the goodness of your heart — but it is difficult to dismiss the hateful things that are said to you. – BJ


Some responses have been edited for grammar and clarity. You can read the original responses here.

Travel with Seniors: A Little Planning Delivers a Lot of Fun

Travel with Seniors: A Little Planning Delivers a Lot of Fun

The busy summer vacation travel season is well underway, as families and friends gather for special occasions, trips of a lifetime, and everything in between. Whatever means of transportation is required, traveling with an older parent or loved one can add layers of complexity to a journey – not to mention assistive equipment such as walkers and wheelchairs – but sometimes a necessarily leisurely pace can allow everybody involved to relax and truly enjoy themselves, no matter what time of year you and your elderly companion hit the road. 

Flying With a Senior Companion

Unpredictable delays notwithstanding, flying usually gets you to a destination faster, but it requires more organization and patience than other modes of transportation. Even though TSA regulations in the United States seem to be a moving target, concessions have been made to seniors (75-plus) and their companions that expedite getting through security checkpoints. Here are a few additional tips to ensure safe and healthy travel with seniors:

  • First, confirm with your loved one’s physician that he or she is cleared to fly, and has had current flu and pneumonia vaccines. Request a doctor’s note explaining any surgical implants or paraphernalia, such as needles. If applicable, a TSA disability notification card can make it more expedient to get through security.
  • At the time of booking, request any desired assistance (wheelchair, electric cart, pre-boarding privileges), and reconfirm a day or two before departure.
  • Select seats in advance, when allowed. An aisle seat toward the front of the plane offers easier boarding and deplaning, but being near the toilets may be desirable for long-haul flights. Compression socks are recommended on flights longer than a few hours, even for travelers without risk of deep vein thrombosis (DVT).
  • Check in for the flight online 24 hours in advance, or call customer service for help choosing an optimal seat.
  • Pack light, but plan to check bags if an aircraft change is part of the itinerary.
  • Get to the airport a full hour earlier than suggested for your departure time.
  • Keep your older traveler’s prescription medications separate from other belongings for easy screening. On-board baggage limits don’t apply to medical supplies, equipment, mobility aids and assistive devices. Liquids exceeding 3.4 oz/100 ml are permitted. (Visit www.tsa.gov for further details regarding U.S. departures.)
  •  If your travel companion has dietary restrictions, order a special meal in advance, when offered, or bring his or her food on board.
  • Apply hand sanitizer liberally, and use antibacterial wipes to disinfect hard surfaces around his or her seat.

 

Tips for Traveling Abroad with Seniors

International travel with a senior may seem especially daunting, but once you dive into the planning process you may find the prospect isn’t as scary as you think. Many nations show great respect to older people, and as world populations age, it has become easier than ever for seniors to travel the globe.

Expert Valerie Grubb, author of Planes, Canes, and Automobiles: Connecting With Your Aging Parents Through Travel and the popular blog Travel With Aging Parents, has traveled extensively with her own mother. “Narrow sidewalks and ancient tourist sites can make some destinations in Europe tricky when vacationing with a parent in a wheelchair,” says Grubb, “so I strongly suggest doing a little research on accessibility before just showing up. That said, Mom and I particularly enjoy Paris and London, and have found local businesses and people to be incredibly helpful as we navigate around the city.”

Here are a few more tips to keep in mind:

  • Several weeks in advance, make sure any vaccines recommended for the destination are up to date.
  •  Ensure passports are valid for at least six months after the return date and request any necessary visa(s) well ahead of time.
  • Have a doctor provide a list of generic names for prescription drugs, as overseas pharmacists or physicians may not recognize all pharmaceutical brand names.
  • Travel insurance for seniors is costly, but it can be a lifesaver. Not only can a senior who takes ill be reimbursed for all or part of a trip, but a policy including evacuation insurance can help get him or her to appropriate medical care in case of an emergency.
  • Consider upgrading your cellular service to a roaming plan that provides full use of your phone for the duration of the trip, so you’ll be able to search the internet freely and call a hospital or ambulance immediately should the need arise. (In the European Union, call “112” for a police, fire or medical emergency.)

 

Traveling With Older People – The Basics

Destination, type of travel, and health and mobility are all mitigating factors that come into play when planning a trip, but a list of tips for traveling with seniors is a great place to start:

  • Do plenty of advance research and don’t hesitate to inquire about senior discounts – for travel, hotels, food, entertainment – both domestically and internationally.
  •  If he or she wears prescription glasses, bring a backup pair, as well as sunglasses for bright days. (Fitover and clip-on styles are great options.)
  • Hearing aids? Don’t forget spare batteries.
  • Use a smartphone to photograph all identification, medical cards and prescription bottles in case of loss or theft.
  • Keep meds in original packaging, and bring a week’s additional supply.
  • Pack a tote with favorite healthy snacks and beverages, and items such as playing cards, a book, travel pillow, and sweater or blanket.
  • Even for seniors who don’t have cognitive impairment, a wearable GPS device or ID bracelet bearing your name and contact phone number can bring peace of mind.
  • A ground-floor hotel room or one near an elevator may be best for seniors with mobility issues. Confirm that rooms identified as “ADA compliant” include grab bars and space for wheelchair maneuverability, as needed.
  • Don’t overschedule, and remain flexible to allow for naps or restroom stops. Whether due to medications, a specific condition, or simply age, older travelers are more likely to tire earlier. Symptoms of Sundowners Syndrome may be more pronounced when seniors with dementia are away from familiar surroundings.
  • To take some of the pressure off you and your family, consider hiring a professional caregiver to accompany you on your travels.

 

Overland Adventures

If time isn’t an issue, a road trip is the easiest and most straightforward way to travel with seniors. Although protracted hours on the asphalt can be exhausting, driving provides the option to stop anywhere and for as long as desired: unplanned detours to must-see sights (Wall Drug or World’s Largest Ball of Twine, anyone?) require little more than a flexible schedule.

While bus and train journeys offer less spontaneity and little or no privacy, they eliminate driving responsibilities, often provide Wi-Fi connectivity, and a restroom is always nearby.

Bon Voyage!

North American cruises are a popular vacation option for seniors because they take a lot of the preparation and trepidation out of travel: most ships and destinations are well equipped to cater to the social, medical, and mobility needs of older passengers. For people who live near one of the nearly 30 U.S. and Canada departure ports, embarking on a cruise is only slightly more onerous than navigating Costco on a Saturday afternoon.

While getting to overseas points of origination requires more time and effort, international cruises can offer senior travelers and their companions exotic experiences that don’t skimp on safety, comfort, or the convenience of English-speaking staff. 

One More Tour, With Honor

Seniors who served in the U.S. military may be eligible for an all-expenses-paid trip to Washington, D.C., to visit the National World War II Memorial and other sites that pay homage to their sacrifice during wartime. Honor Flights are made possible by generous donations from corporations, individuals, volunteers and airlines – including Southwest, the organization’s official carrier.

Since 2005, the non-profit Honor Flight Network (consisting of two groups that joined efforts in 2007) has flown tens of thousands of veterans to one of the three D.C.-metro airports, where arrivals are greeted by representatives from Heroes’ Welcome, an Honor Flight sub-group. A friend, family member or volunteer guardian typically accompanies vets.

As of May 2017, there are 131 hubs in 45 states, making it easier than ever for a veteran to get to an Honor Flight departure point. The program is primarily available to World War II and terminally ill veterans, but is also increasingly open to veterans of the Korean and Vietnam wars. To donate, apply or learn about self-funded tour participation, visit honorflight.org.

For more information

Traveling with an Elderly Parent

Caregiver Tips for Traveling with the Elderly

4 Ways to Soothe Sundowner’s Symptoms

Caregivers Traveling with Families

7 Tips for Safe and Healthy Travel with Seniors

Honor Flights Offer Veterans One More Tour with Honor