Free course about understanding dementia

We tripped across this multi-week free course offered online by the University of Tasmania in Australia. We did not sign up, but we did poke around and it looks interesting, engaging, and helpful. 

It's worth checkng out. 

Go here: https://mooc.utas.edu.au/?utm_source=Facebook&utm_medium=Landing%20Page&utm_campaign=UDMOOC

Aging well: helping our elderly parents get the most out of their lives

This article could help you think about ways to inspire your aging parents to get the most out of their lives moving ahead. 

It focuses on lifestyle, motivation, activities, and social interaction. Read it here: http://ctv.news/cAtd84g

Alzheimer’s in the family? Should you test yourself?

Here is a very thought-provoking recent article from the Globe & Mail about whether those of us caring for aging parents with dementia should consider getting ourselves tested to see if we have the gene that will more than likely ensure we end up with Alzheimers. It will make you think about this pressing dilemma. 

A blood test can reveal if you carry a hereditary gene, but many people decline to find out.


Marty and Matt Reiswig, two brothers in Denver, knew that Alzheimer’s disease ran in their family, but neither of them understood why. Then a cousin, Gary Reiswig, whom they barely knew, wrote a book about their family, The Thousand Mile Stare.

Continue reading “Alzheimer’s in the family? Should you test yourself?”

How technology could help with dementia care

Here is a really interesting recent article on hoe evolving technology could do more to help in the home where demential is an issue and challenge:


A chance conversation was all it took to give Alex Mihailidis’s burgeoning career a new focus.
As a graduate student in 1996, the now 41-year-old met a man whose wife had developed dementia in her early 50s. Her bizarre behaviour, such as taking soiled toilet paper, folding it up and hiding it around the house, had her husband at wit’s end.

Continue reading “How technology could help with dementia care”

Childless, unmarried baby boomers warned to prepare for future

Childless, unmarried baby boomers warned to prepare for future.
Dr. Mireille Norris says elder orphans are a growing problem across the country.
    
A new study is raising awareness about the problem of "elder orphans" — seniors who have no children, spouse or any other family member to care for them as they age.
The research comes on the heels of an incident earlier this week in North Carolina in which an 81-year-old cancer patient with no caregiver called 911 to ask someone to buy him some food.
Dr. Maria Torroella Carney, the chief of geriatric and palliative medicine at North Shore-LIJ Health System, recently completed a case study and literature review that she will be presenting to The American Geriatrics Society's Annual Scientific Meeting this weekend.

Continue reading “Childless, unmarried baby boomers warned to prepare for future”

Exercise can help slow disease progression in elderly

Exercise can help slow disease progression in elderly.
Though being active won’t reverse dementia, buying ‘two or three years
of quality time is pretty significant,’ researcher says
Sure, physical activity is good for your body and mind. But why? And
how much of it do you really need?
Researchers examining the benefits of exercise are now getting down to
the nitty-gritty, finding new clues about how it may deter illnesses
such as dementia and cancer.
While there’s plenty of evidence to show that regularly breaking a
sweat may reduce the risk of Alzheimer’s disease and other forms of
dementia, much of that research has previously been conducted on
healthy individuals. But new studies presented this week at the
Alzheimer’s Association International Conference in Washington suggest
physical activity may also improve the lives of those who already have
the disease or are on the path to developing it.
One of those studies, conducted in Vancouver, showed “significant”
improvements after exercise in the cognitive function of participants
with mild vascular cognitive impairment, or “silent strokes,”
characterized by small lesions of damage in the brain.
Silent strokes tend to go unnoticed and don’t come with the typical
signs of stroke, such as facial drooping and slurred speech. But they
do tend to lead to these more severe, obvious strokes and increase the
risk of vascular dementia, where restricted blood flow to the brain
causes cognitive issues, explains researcher Dr. Teresa Liu-Ambrose,
an associate professor and Canada Research Chair at the University of
British Columbia and the Vancouver Coastal Health Research Institute.
Among the 71 participants in the study, ages 56 to 96, those who did
moderate-intensity walking for 60 minutes, three times a week, not
only showed better cognitive function, such as memory and attention,
after six months, compared with those in the control group, who were
not assigned regular exercise; their cognitive function also tended to
be better than at baseline, suggesting exercise may minimize the
progression of silent strokes.
Scans showed the brains of those in the exercise group were also more
efficient. Plus, participants who exercised reduced their body mass
index and blood pressure – which is not exactly surprising, but
supports the idea that cardiovascular health is vital to maintaining
brain health.
“The converging suggestion is that exercise … truly can [affect] the
very mechanistic level at which … people are developing the cognitive
issues,” Liu-Ambrose says.
That’s not to say you can reverse dementia with regular exercise, she
says. But it may halt its development. “To even buy yourself two or
three years of quality time is pretty significant,” Liu-Ambrose says.
Meanwhile, researchers in Alberta have found 300 minutes a week of
moderate to vigorous aerobic exercise is better than 150 minutes a
week for reducing the risk of breast cancer. In a study published in
the journal JAMA Oncology earlier this month, Calgary cancer
epidemiologist Dr. Christine Friedenreich and her team tested how
differing amounts of exercise affected body fat in 400 inactive
postmenopausal women, since body fat has previously been shown to
increase the risk of postmenopausal breast cancer.
One group was assigned to exercise 30 minutes for five days a week,
for a total of 150 minutes, which is the minimum recommended by
Canada’s physical activity guidelines. A second group was asked to
exercise for 60 minutes, three days a week for a total of 300 minutes.
Both groups were asked not to change their diets.
“A lot of the [physical activity] guidelines were actually developed
for cardiovascular disease prevention,” explains Friedenreich of
Alberta Health Services and the University of Calgary. “But for
cancer, we hypothesized that we might actually need a greater amount
of exercise.”
The researchers found both groups benefited from sticking to their
assigned exercise regimen for 12 months, but those who did a higher
volume of exercise had greater reductions in body fat. Previous
research by the team showed a dose-response to exercise, leading to
reductions in a series of biomarkers including body fat, endogenous
estrogen, insulin resistance and inflammation.
Friedenreich considers her latest findings empowering for many, as
physical activity is an inexpensive and non-invasive way of reducing
one’s risk of cancer. “A lot of people are quite concerned about
getting cancer and this is something they can do,” she says.

WENCY LE­UNG  © Copyright The Globe and Mail Inc. All Rights Reserved

Car­ing for Alzheimer’s pa­tient more stressful for spouses

This is an interesting article about a research study into the impact of caring for Alzheimer's patients on spouses. Having spoken over the years to thousands of family caregivers who are both spouses and children of Alizheimer's victims, it's very clear to me that there is a lot of mounting and cumulative stress on them, and we must find a way to help them better cope and alsodefuse.


Caring for a loved one with Alzheimer’s disease isn’t easy under the best of circumstances, but it may be much more stressful for spouses and people who suffer from depression, a Finnish study suggests. Researchers followed 236 family caregivers of Alzheimer’s patients for three years after the diagnosis. Caregiving appeared to be much more stressful for people who were married to the patients or who suffered from depression when the study began.


“Even minor depressive symptoms at the beginning of caregiving are a significant predictor of psychological distress during the years of caregiving,” lead study author Tarja Valimaki of the University of Eastern Finland said by e-mail.


The findings suggest that spousal caregivers should receive mental health evaluations at the time that their loved one is diagnosed with Alzheimer’s, Valimaki added.


“Alzheimer’s disease patients’ home care is reliant on caregivers, and it is not reasonable for spousal caregivers to put their own health at risk due to the caregiving,” Valimaki said.


The study included 166 Alzheimer’s patients being cared for by their spouses, as well as 70 patients being cared for by other loved ones. Researchers assessed psychological stress by asking caregivers about their ability to carry out daily activities, social functioning and the appearance of new sources of distress or concern in their lives.


At the start of the study, caregivers and patients who lived together had typically been sharing a home for more than three decades. Spousal caregivers were older and reported more depression than caregivers who weren’t married to the patients.


Over three years, psychological distress appeared to increase significantly among spousal caregivers but not among non-spousal caregivers, the study found.


One limitation of the study is that almost half of the participants dropped out before the end, the authors acknowledge in the Journal of Geriatric Psychiatry and Neurology. Even so, the study highlights the need for doctors and nurses to consider two people patients in an Alzheimer’s diagnosis – both the person diagnosed and their partner or spouse, said Barbara Given, a researcher at the college of nursing at Michigan State University in East Lansing.


“Not everyone can be a good caregiver and as professionals we need to do an assessment and determine who can do it, who wants to do it and who needs other support to do it,” Given, who wasn’t involved in the study, said by e-mail.


Another challenge may be financial, noted Carol Levine, director of the Families and Health Care Project at the United Hospital Fund in New York. “In the U.S. there are few alternatives and those that do exist are expensive and beyond the reach of most families or considered unacceptable ,” Levine, who wasn’t involved in the study, said by e-mail.

 

© Copyright The Globe and Mail Inc. All Rights Reserved. (Ontario Edition) – 2015-10-07; by LISA RA­PA­PORT

How to communicate with someone who has dementia

How to com­mu­ni­cate with some­one who has de­men­tia is a terrific recent Globe & Mail article by Renée Henriques.

Her recommendations are very sound and mirror the ones in our Parenting Your Parents books. Please read, absorb, and apply.

I own a senior home-care company in Toronto, and most of our clients have some form of dementia. Last week, one of our clients, who I will call Mrs. Smith, called to cancel her caregiver for the following day:

“I feel like I am doing better, Renée, and I just want to see if I can get through the afternoon without a caregiver.”

“Sure, Mrs. Smith,” I said, and cancelled her caregiver.

The next day Mrs. Smith called and angrily demanded why her caregiver had not shown up. I apologized for my oversight. I told her that we would ensure that her caregiver was there within half an hour. Trying to explain what really happened would have been like trying to convince her that her name was not Mrs. Smith. Rule No. 1 of dealing with people with dementia: Never argue.

According to the most recent count from the Alzheimer Society of Canada, 747,000 Canadians suffer from Alzheimer’s disease and other dementias. That’s 14.9 per cent of Canadians 65 and older. For those living with dementia, life can be very frightening. Every interaction feels like a big question mark. For those of us who work with people with dementia, and those people who have loved ones or friends suffering from dementia, a few changes in the way we communicate can bring great comfort, and diffuse potentially anxious situations. Here are some key tips that have helped me over the years:

1) Never argue. Ever. Drop your need to be right. If Dad says he wants to call Aunt Eileen, who died 50 years ago, just pick up the phone and dial. Be creative; leave a message somewhere. Trying to convince Dad that his aunt passed away a long time ago will be confusing and distressing. In our industry, we call these little white lies “therapeutic fiblets.” They preserve our clients’ dignity and peace of mind, two things more important than having a firm grasp on reality for many dementia sufferers.

2) Redirect. After your therapeutic fiblet, try to get Dad thinking about something else. Get Dad to tell some stories about Aunt Eileen, and then use something in that conversation to direct the conversation elsewhere: “Aunt Eileen used to walk every day? Did you want to take your walk now?” Talking about anything not having to do with Aunt Eileen may take Dad’s mind into a different place and he may lose the need to call his longdead relative. And if he does not forget, then just check messages to see if Aunt Eileen has called back and repeat.

3) Be aware of your mood and your body language. People with dementia read your body language to pick up cues. If you are distressed or frustrated about anything, your mom will read that discomfort and surmise that something is wrong. She won’t know what it is and may assume that she has done something wrong. When you are calm, she will be calm. When you are anxious, she will take that on, too. Check yourself at the door as much as possible.

4) Strike the phrase “remember when” from your vocabulary. “Remember when we talked about this yesterday Mom, and you said you wanted to go to dinner?” Mom does not remember, and this question could make her confused and embarrassed.

5) Offer options and ask yes or no questions. Phrase questions simply, and ask questions that require a yes or no answer, not a narrative response. Always offer choices when possible, and present no more than two options. People with dementia are likely to pick the last choice, so craft your questions accordingly. The need to choose and feel autonomous and in control stays with us, even if our memory is fading. Offering Dad choices will give him a sense of control, a hot commodity in a dementia sufferer’s life.

To paraphrase Bob DeMarco of the Alzheimer’s Reading Room (a respected website about dementia-care issues): “If someone with dementia thinks something is true, it’s true.” Mrs. Smith was right to think I had forgotten to send her caregiver, because she did not remember that she had cancelled. It was my job to accommodate her reality, admit my “mistake,” and fix it. Honouring the reality of the dementia sufferer in your life will create empathy, smooth difficult interactions and create opportunities for moments of surprise and joy. Who knows? One of these days, Aunt Eileen might pick up the phone when you call.

Renée Henriques is a registered nurse and the owner and managing director of ComForcare Home Care Toronto, providing personal support services to seniors. Her passion for seniors and their families stems from her past work as a neurosurgical nurse, and her experience going through a lengthy caregiving journey with her own family members.

© Copyright The Globe and Mail Inc. All Rights Reserved

White House conference: value our elders and those who care for them

A Message from the White House Conference on Aging:
Value Our Elders and Those Who Care for Them

Posted: 07/14/2015 12:07 pm EDT Updated: 07/14/2015 12:59 pm EDT

Today marks the 50th anniversary of the Older Americans Act, which will swiftly be followed by the 50th anniversaries of Medicare and Medicaid, and the 80th anniversary of Social Security. Yesterday, I was honored to join hundreds at the White House Conference on Aging to celebrate these key programs and look ahead to the next decade of issues impacting older Americans. It could sound like a broken record to say that there’s no better time than now to take stock of what we need to do to meet the needs of our elders and 21st-century families. But judging from yesterday, we need to play it louder.

A couple of heartening and sobering notes from the conference to keep in mind as we continue to chart a path forward. David Hyde Pierce, a longtime Alzheimers’ advocate, reminded us that “to age is to live, and to care is to be human.” This simple declaration underscored how “aging” issues, whether retirement or long-term care or elder abuse, are not just about older Americans. They are about all of us and all our families. Professor Fernando Torres-Gil put it another way later when he noted, we are all “temporarily able.” As a culture, we must embrace that reality and prepare for it with creativity and compassion, and put dignity at the center of our planning.

There is no area where this is needed more than long-term care. Nearly 100 million Americans are impacted by the need for long-term care, and that number grows every day. But many individuals have unmet needs because government-funded programs often provide insufficient coverage for long-term services and supports. Meanwhile many families cannot afford to hire home care workers and their family caregivers are stretched too thin.

Britnee Fergins, a mom who also cares for her aging father and a two-year old, is one of these family caregivers, or who I like to call members of our nation’s Careforce. She sat with me on the morning’s caregiving panel. When asked if she had enough support, she unsurprisingly answered no. She said the support that was available was at best a patchwork of understaffed and confusing runaround of services. And she could greatly benefit from badly needed policies like paid family leave, so that she could accompany her father who has Alzheimer’s on his way to surgery without fear of losing her job.

She is not alone in her frustration. Nationwide, there are more than 40 million adults who are caregivers for an aging parent, a spouse, or other loved one who needs additional assistance. And among all adults over the age of 40, nearly 1 in 10 are both supporting a child and providing ongoing living assistance for a loved one. Many in this sandwich generation — caregivers squeezed between caring for an aging parent and their own children — should be called part of the Panini generation, because they’re so pressed and overwhelmed.

Women comprise the majority of the paid care workforce and family caregivers, and a disproportionate number are women of color. Like too much of work that women primarily do, care work is often significantly undervalued. Research on the undervaluing of care work is ongoing, and new research has also begun to focus on the needs of those caring for veterans, youth who are primary caregivers, and LGBT older adults. These challenges will only continue to grow over the next decade.

We all want to see our elders age with dignity — cared for by people who love what they do and have the support they need to do their best work. While the White House Conference on Aging began to highlight the importance of these issues, local and state governments will likely need to lead the way to the bold, comprehensive and innovative solutions this country needs. But there are several steps the federal government can and should make more immediately to get the ball rolling.

Caring Across Generations and the Make it Work Campaign, with the support of seniors, family caregivers, home care workers, people with disabilities and women of color across the country, present the following policy proposals making long-term care affordable and flexible for all families while also supporting high quality jobs and care.

To address affordability and flexibility, family caregivers need more support. No one should have to choose between paying their bills and being there for the family they love. We support the FAMILY Act, which provides paid leave so that people can afford to care for their loved ones and themselves when they face serious illnesses. Additionally, to protect the retirement security of caregivers, we also support caregiver credits that provide individuals with Social Security credit for time spent out of the labor market to provide care to close family members. And we also propose support for family caregivers including respite care, in-home training, and inclusion in discharge and care planning.

In addition, as a down payment on the innovation needed to find the best, most flexible , affordable long-term care solutions, we are advocating for a new federally funded state innovation fund to support planning and pilot programs, so that we can create, replicate and scale programs that address long-term care needs and care workforce development. These innovations must include creative ideas about home and community-based care. While institutionalized care is necessary in certain cases, most Americans want quality care in their homes and community. In fact, 90 percent of Americans prefer to receive care in their home. That’s why we also support rebalancing public programs toward a greater investment in, and emphasis on, community and home-based care.

Home care is one of the fastest growing industries in our economy, providing critical daily care, services, and supports to millions of individuals and families across the country. However, the quality of home care jobs is very poor, with low wages, few benefits and protections, high turnover, and a high level of job stress and hazards. Those caring for the people WE love should also be able to care for those THEY love. This requires a significant federal investment to support the more than one million new jobs needed over the next decade. That investment must cover training initiatives, like the one announced yesterday, and other measures to guarantee high quality jobs and care. Paid caregivers, including live-in domestic workers, must receive overtime protections, a minimum wage of at least $15 an hour, paid sick days, and flexible, predictable work schedules. They also need access to affordable, high quality, flexible care for their own children and elders, and paid family and medical leave.

These investments in the care workforce will support high quality care, as higher paid employees will be less likely to leave for other work and more training and career pathways will improve the skills and capacities of the workforce. We need a public investment large enough to ensure that families are not pitted against providers and affordability and quality can go hand in hand. We are committed to ensuring that increased costs from raising wages and improving benefits do not lead to reductions in services to consumers.

When President Johnson signed Medicare into law on July 30, 1965, he said: ”No longer will older Americans be denied the healing miracle of modern medicine. No longer will illness crush and destroy the savings that they have so carefully put away over a lifetime so that they might enjoy dignity in their later years.” We call upon our elected officials to tell us what they will do to be able to add to this: “No longer will caring for our family members be a struggle, but an easier, affordable part of everyday life.”

From the Huffington Post
By Ai-jen Poo; follow her on Twitter: www.twitter.com/aijenpoo

When the ending is really beginning

When the Ending is Really Beginning is a spring 2004 column I wrote in Solutions magazine as a regular contributor. I just found this piece tonight, and I’d like to share it with you in the hopes that, if this is now your world, you’ll know you’re now alone. So this is what I’d written…

We truly try to do our very best in the process of supporting our parents and their wellbeing.

As they age ever onward, we watch with awe and trepidation; we act with care and compassion; we feel a certain measure of fear daily and relief when they seem reasonably well.

But the time comes—as it always does—when the inevitable ending really is beginning.

Such is the case now with my father, who is going on 99 long years of age.

For the past eight weeks, he has been bedridden. He seldom eats solid food at all. He sips on fruit juices, some Ensure, and soda water. He is on a daily sodium chloride drip, and has a condom catheter attached to him.

Sometimes he is quite lucid. More often, he is delusional and delirious and hallucinates.

There is actually nothing physically wrong with him. He doesn’t have any definable illness. He just didn’t get up one day eight weeks ago, and now can’t.

His exceptionally caring family doctor, who comes to see him weekly, and I have spoken numerous times about the options: to be aggressive (read hospitalization), or passive (read keep him at home and make him as comfortable as possible).

My father says he wants to stay home. I agree with him. There is nothing they can do in a hospital to make him better; he won’t walk again, let alone dance again, or think any better again, or do much of anything again.

The doctor and I also have discussed the option of tube feeding. Aside from the discomfort of the process, I have real trouble grasping what benefit that might be, other than making him live longer than he might wish. Keeping him alive now is for my benefit, not for his; to tube feed him really would be an act of selfishness on my part.

Tube feeding begs the debate of the sanctity of life versus the quality of life.

These past weeks, I have continued to visit him as often as I can. I ask what I can do for him, and he says there is nothing. I share memories from my childhood, and fun and meaningful experiences together, in the hope of giving him some pleasurable mental moments and a sense of satisfaction.

I rub his neck and back, and massage his feet and legs, which he enjoys greatly.

In my heart, I so want him to be better, but in my head I know he won’t be.

I report on his condition to my mother on my regular visits at her nursing home. My mother clearly has mixed emotions, but as often as not, is being remarkably astute given her condition. She observes that her husband is old; that he has lived a long life, and that he should not suffer.

Last week, I arranged for her to have a visit home so they could share some time together. It worked reasonably well, and if developments permit or demand, we’ll do it again.

So now I watch, wait and worry about what else might be done to make him safe and comfortable.

He has great care. One home care service, Spectrum, sends a man daily to bath and shave him. A Saint Elizabeth nurse comes daily to hook up his IV bag and check on him. Our live in caregiver attends to him around the clock with patience and quiet resolve.

But watching him wilt away, listening to him ramble on about people and events from his distant past or some terrible event imagined in his mind, and feeling him ever so slowly but surely sliding toward the personal conclusion of his life, is an agonizing experience for me.

I love my father, as deeply as I do my children.

And I know I must accept that he will die in the near future.

My profound hope is that he will die at peace with himself, in the knowledge that he did so many wonderful things, and that he is respected and loved by those of us near to him.

And when he dies, I hope I will have the strength and resolve to grieve as I must, celebrate all we shared, carry good memories, and march on. Because that’s the way of the real world, like it or not.

Coping Strategies:
• Do what’s right for your dying parent, not what may feel right for you.
• Fortify your mind and body, because the challenge at hand will drain you.
• Spend as much time as you can with a dying parent; share fond memories and know that just being present, quietly, is important.
• See what palliative care services are available and might be helpful.
• Make as many funeral arrangements in advance as possible.
• Get personal support and help—you’ll need and welcome it.