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?”

Elderly parents may be taking wrong medications

 

This is an interesting and worrysome article about how many aging people are taking the wrong medicines: http://www.ctvnews.ca/health/more-than-400m-a-year-spent-in-canada-on-drugs-that-harm-seniors-study-1.2956741

If you haven't, it might be a good time to ensure your aging parents and loved ones are taking the right meds. Talkk with them; ask their pharmacists to go over what they take. And don't forget over the counter medicines and vitamins.

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”

Study shows better palliative care needed

Posted on May 2016 by

This is an interesting and relevant article that should be of interest to all of us who are caring for  declining older parents and other loved ones:

Thousands of Canadians are suffering unnecessarily each year because they do not have access to palliative care, says a new study by the Canadian Cancer Society that calls on governments to make end-of-life care part of a new federal-provincial health accord.

Continue reading “Study shows better palliative care needed”

A parent facing the loss of the driver’s license

One of the biggest challenges your parent may face is the impending or actual loss of the ability to drive, or the loss of the driver's license.

Some elders have enough insight to realize that driving is becoming too stressful or perhaps dangerous and gradually decrease the nature of their driving.

I have seen many who on their own cease to drive on major highways or do not drive after dark or when the weather is inclement. Some decide on their own to give up their car because owning it has become a hassle, what with the costs, the repairs, the parking issues depending on where they live.

I recall the challenge to my late father and the early indication of his cognitive decline when he began getting parking tickets for failing to move the car to the correct side the street when the city introduced alternate side of street parking for street cleaning. As often happened, he correctly moved the car, but failed to recall he did so and then moved it back to the "wrong" side of the street with the subsequent hefty parking fine.

The most challenging scenario that you may be called up to assist your parent is after a visit to a physician, such as a geriatrician for an assessment of cognitive decline where the issue of driving comes up, which is not expected by the patient and by the end of the visit, your parent discovers that his or her driver's license is either in jeopardy pending a more in-depth driving assessment. Or, of a report that is going to be sent to the licensing authority reporting significant cognitive impairment or dementia which in most jurisdictions results in the cancellation of the driving license. This often leads to outrage, fury or disbelief on your parent's part as they try to dissuade the doctor, or put the blame on you for taking them to the appointment.

It is not easy to deal with this, but with time and repeated explanations by the doctor as to the necessity of following the law the anger may wear off. Moreover, if you do a good accounting of the cost of keeping the car, the cost of insurance, repairs and parking, it often turns out that the money saved will more than pay for any taxi trips required by the person to do what they were doing with their car. Many local taxi companies happily create accounts with elders that avoids having to pay for each ride and many provide assistance with walking devices for example. It is a challenge, one that occurs often, but will usually wane in time–it cannot be avoided but can also be dealt with in a supportive and compassionate manner.

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

Mediation can help resolve sibling issues in eldercare.

Mediation can help resolve sibling issues in eldercare.

Sibling misunderstndings, competing agenda, conflicts, mistrust: all can too easly lead to troubles when trying to care for an aging parent. Here is a very good piece from the New York Times worth reading to know more about this issue and how mediation can help.

http://www.nytimes.com/2015/05/30/your-money/strengthening-troubled-sibling-bonds-to-deal-with-an-aging-parent.html?emc=edit_bg_20150602&nl=booming&nlid=14333851&_r=0

Care­giv­ing obli­ga­tions spur need for flexible work hours

from 'The Globe and Mail Metro (Ontario Edition)' – 2015-10-03

by VIR­GINIA GALT

Stephen Shea, a Toronto-based managing partner at Ernst & Young LLP, knows as well as anyone the enormous relief of being free to leave work, on occasion, to care for a seriously ill family member. This demonstrates that caregiving obligations spur need for flexible work hours.

After his mother suffered a debilitating stroke four years ago, Mr. Shea was able to be there when she needed him most. During periods when his mother’s condition was relatively stable, he stopped by to see her every night on the way home from work. But when something required urgent attention, he could attend to it quickly – “with the total support of the firm.”

As managing partner of talent for Ernst & Young in Canada, and a global partner in the resource sector, Mr. Shea was accustomed to working long hours in any event. Starting early and working late gave him the flexibility to step out at midday, as necessary.

“You do what you have to do,” Mr. Shea said in an interview. There’s no question that juggling work and caregiving responsibilities for a prolonged period “just grinds you over time.” Still, Mr. Shea, whose mother died two years ago, remains profoundly grateful for the support of his chief executive officer and colleagues.

The conflict between work and caregiving is an issue more Canadian employers are grappling to address because longer life spans have made elder care a pressing issue for many employees, said Mr. Shea, who served as chairman of an employer panel appointed by the federal government in 2014 to look at ways in which organizations can help.

“Only a few years ago, it may have been considered career-limiting for a parent to leave at a set time to collect a child from daycare. Today, most organizations accept and support this situation without question,” the panel said in its report, When Work and Caregiving Collide: How Employers Can Support Their Employees Who Are Caregivers.

However, when it comes to looking after ill or disabled relatives, many employees fear their careers will suffer if they request time off or flexible work arrangements.

This is not necessarily the case, Mr. Shea said, but employers are hard-pressed to help if they are unaware of the need for accommodation. Indeed, his panel’s report said, the majority of these caregivers “are 45 or older, often talented and experienced employees possessing deep company or industry knowledge … people we don’t want to see exit the work force.”

There are varying estimates of how many working Canadians are caught in this dilemma. Human resources firm Ceridian Canada Ltd. reports that 2.8 million working Canadians, or 17 per cent of the work force, have heavy caregiving responsibilities outside of work. “Even more alarming is that the average caregiver dedicates 23.8 hours per week to caregiving activities,” Ceridian wrote in a recent report, Double Duty: The Caregiving Crisis in the Workplace.

Estelle Morrison, vice-president of clinical and wellness services at Ceridian Canada, said employers have traditionally accommodated employees on an ad hoc basis. Some organizations are now looking at more formal policies that are flexible enough to accommodate their employees’ unique needs on a case-by-case basis, while ensuring that the work still gets done.

“The challenge for employers is to create a flexible work system that is trackable, accountable, and fair for all – without ruffling any feathers or risking undue losses,” the Ceridian report said.

Ms. Morrison said employees who do not have caregiving responsibilities are more likely to support alternative work arrangements for their colleagues when they know similar accommodations will be offered to them when, and if, they ever need them.

“It sends the right message [when the employer says] we expect this certain amount of work to be done, but the way in which it gets done is something we may be able to accommodate,” she said.

Sometimes, the remedy is as simple as a shift change that allows employees to schedule daytime appointments for the person they are caring for. Or it might involve days off here and there.

“It’s one thing to say ‘we’ll give you leave,’ but a lot of people can’t afford it, so an extended vacation program where people can take reduced pay and more time off, may work at various points of the year,” Mr. Shea said.

“You have to come up with different ways to be flexible. … It [the time spent on the job] is not always equal week to week, day to day. It’s the flexibility to allow people to work when they have to work and deal with family issues when they have family issues,” he said.

Linda Speedy, chief human resources officer at KPMG LLP in Canada, says the range of accommodations offered by her firm includes paid personal days and the option to telecommute.

“When longer absences are required, a temporary reduced work schedule can be arranged to allow more capacity for personal needs while maintaining a client-service role,” Ms. Speedy said. “If employees need to be away from work completely for a period of time to support family and friends, an unpaid leave with continued benefits can be arranged.”

In the end, she said, having a corporate culture that makes it possible for people to discuss their needs and get support is “far more important” than the programs themselves.

 

© Copyright The Globe and Mail Inc. All Rights Reserved

 

Car­ing for the care­givers

[This is by SUZANNE BOW­NESS, as printed inThe Globe and Mail Metro (Ontario Edition) and certainly waves a big yellow flag about thoss of us who provide eldercare in the family: a flag we've been waving since our first Parenting Your Parnets book together in 2001]

 

Pilot program provides workplace support for employees dealing with ailing relativesl or, caring for the caregivers.

Brenda Hill has many identities. She works as a wealth adviser for BMO Nesbitt Burns in Caledon, Ont. She’s the primary caregiver for her 78-yearold mother, diagnosed five years ago with Alzheimer’s disease. And she’s the mother of two twentysomething kids.

Yet, it’s a new role that has helped her cope with the stress of juggling it all: She’s a participant in a five-year pilot program launched by Mount Sinai Hospital’s Reitman Centre for Alzheimer’s Support and Therapy in co-operation with Bank of Montreal to help employees caring for family members with the disease.

This program and others like it are signs that workplaces and policy makers are starting to take caregivers’ needs more seriously. Last year, the federal government announced the Canadian Employers for Caregivers Plan, which called on a panel of employers for their suggestions about how to better support caregivers and keep them in the workplace. And in January, there was an extensive panel on the topic at this year’s Human Resources Professionals Association (HRPA) conference. These conversations come just in time, too. A 2012 Conference Board of Canada study estimates the cost to employers in lost productivity because of caregiving responsibilities to be $1.28-billion a year.

Statistics Canada shows that 8.1 million Canadians are caregivers and, of those, 6.1 million are in the work force. Most of the caregivers are between the ages of 45 and 64, a group that also comprises the most experienced workers, says Allison Williams, a professor at McMaster University in Hamilton and research chair for the Canadian Institute of Health Research.

Since more than half of caregivers are helping their aging parents, Dr. Williams says the problem is set to worsen as the number of seniors requiring care is projected to double between 2012 and 2031.

For Ms. Hill, meeting regularly with her five fellow pilot-program members over the sixweek course provided an opportunity to share information about disease symptoms, develop a support network and gain expert advice on how to cope.

For instance, Ms. Hill learned that she should just listen to – rather than correct – the garbled stories her mother sometimes told, advice that reduced her mother’s agitation, a symptom common to many people with dementia. Role-playing exercises helped participants to problem-solve complex situations, such as advocating for their loved ones more effectively with doctors. Ms. Hill has also been able to share her new knowledge with others; for instance, connecting her stepfather with an Alzheimer’s Society support group and offering tips to her siblings.

“People come to me now because they know I’ve gone this route and have information,” she said.

In 2004, Canada implemented Compassionate Care Benefits as part of the Employment Insurance system, a program that allows caregivers – widely defined to include everyone from parents to children to friends to common-law partners – up to six months of benefits (expanded in the April, 2015, budget from a previous cap of six weeks). Yet, the 2012 Statistics Canada report also noted that only 12 per cent of caregivers had taken advantage of the program. Dr. Williams attributes this low uptake to lack of awareness.

While caregiving experts applaud the program as a positive step, they also say that caregiving can be much more protracted, and the kind of job that can require a morning off to drive a patient to a medical appointment, or an unplanned departure from work to head to an emergency room or senior’s home.

That’s when workplaces can help by instituting flexible work arrangements.

Sharon Baxter, executive director at the Canadian Hospice Palliative Care Association, says that companies need to make such policies official. “A lot [of] workplaces say that they accommodate caregiving, but they haven’t written it into their policies and that can actually become a bit problematic because then you don’t get the same consistency across employees. Somebody who works near the executive office has got a better chance of getting the time off than somebody that works in a plant,” Ms. Baxter says.

For workplaces that have implemented policies and programs, the level of response is telling. Natalie Scott, managing director of global benefits and recognition at BMO, was surprised at the high turnout to an information session about the Alzheimer’s pilot. “We had over 100 people attend. It was standing room only,” she recalled.

Pharmaceutical company GlaxoSmithKline, which introduced its own compassionate care program back in 2002, predating the government legislation, offers eligible employees up to 13 weeks of leave over a two-year period. Eligible employees with at least three years of service receive 13 weeks pay at full salary. Since it was introduced, approximately 160 employees have taken advantage of the program. Human resources vice-president Tracy Lapointe says that while the program demonstrates respect for employees, there is also a strong business case that helps with more practical goals such as retention and staffing. “Their colleagues know they will be away for a certain period of time, so we can plan for it as [a] business, and have the right coverages in place.”

For workplaces that ignore the needs of the growing contingent of caregivers, the risks are high. “The data we have now suggests that we are losing talented people, some of them senior people with considerable skills and experience. We’re seeing absenteeism. We’re seeing people reducing to part-time and ‘presenteeism’ and stress as well,” says Donna Lero, a professor at the University of Guelph’s Centre for Families, Work and Well-Being.

Another burden is the personal cost to individual employees who risk burnout, Dr. Williams says. “What usually happens first is fatigue, then mentalhealth issues like depression and anxiety, and then finally physical health issues.”

While large employers with deeper pockets seem to be leading the charge on official policies, smaller organizations can also take steps. Revisiting start or end times, allowing employees to “bank” hours, and empowering managers to be flexible with their direct reports are common suggestions. “Some are as simple as making sure that the caregiver employee has the parking spot nearest to the exit door so that during their lunch they can take grandma to her specialist appointment,” Dr. Williams says.

 

© Copyright The Globe and Mail Inc. All Rights Reserved

 

Public worries about se­nior care’s fu­ture

Here is a terrific recent article by a most respected health writer about Canadians' views of its health system's ability to offer the kind of coverage and protection that's come to be expected. It's about how public worries about senior care's future.

by AN­DRÉ PI­CARD

Canadians are rapidly losing faith in the ability of the health system to provide care for their aging loved ones and they want the federal government to step up and find solutions, two new public opinion surveys show.

Fewer than one in four believes there will be adequate home care and long-term care facilities, and just one in three thinks there will be sufficient hospital beds available to meet their basic medical needs as they age, according to a poll commissioned by the Canadian Medical Association.

At the same time, three in five of those surveyed do not feel they are in a good position – financially or otherwise – to care for aging family members in need of long-term health care.

The CMA, which represents Canada’s 80,000 physicians, residents and medical students, is holding its annual meeting in Halifax this week, and it is using the occasion to press all federal parties to commit to adopting a national strategy on seniors’ care.

“We don’t want little election goodies with a seniors’ theme; we want a commitment to a long-term strategic plan,” Dr. Chris Simpson, president of the CMA, said in an interview.

“Everyone already has horror stories in their families, and when they hear the doomsday stats, they really get worried about the future,” Dr. Simpson said. “Seniors’ health care is an issue that is really starting to resonate across the generations.”

A second poll, commissioned by the Canadian Alliance for Long Term Care (CALTC), found that just 18 per cent of citizens believe that hospital and longterm care homes would be able to meet the needs of the aging population, and only 20 per cent think there will be enough trained staff to provide adequate care.

The CALTC survey also showed that the top three concerns about the health-care system are long wait times for surgery, lack of access to long-term care and insufficient home-care services.

Candace Chartier, chief executive officer of the Ontario Long Term Care Association, agreed that public angst is growing. “How we are going to care for our aging population is the No. 1 concern of Canadians,” she said. “The public realizes what’s coming down the pipeline and they’re frustrated that governments aren’t reacting.”

In fact, both polls showed that voters want the federal government to take a leadership role on seniors’ care, but they also realize this has to be done in conjunction with the provinces.

In the survey conducted for the CMA, 89 per cent said the next prime minister needs to make addressing the health needs of Canada’s aging population an “urgent priority,” while the CALTC poll found that 93 per cent believe Ottawa has an obligation to ensure Canadians have equitable access to care, regardless of where they live.

A significant number of those surveyed, 57 per cent, said that how they vote in the Oct. 19 federal election will depend, at least in part, on which party has the best plan to address seniors’ health care.

Seniors now represent 15 per cent of the population, up from 8 per cent in 1971. By the time all of the baby boomers have reached 65, they will make up an estimated 25 per cent of the population.

While this demographic shift is having an enormous impact on demand for services, the health system has been slow to adjust and is struggling to keep pace.

The result is seen, among other things, in the rationing of home care, ever-worsening shortages of nursing home and longterm care spots, hospital beds filling up with frail seniors with nowhere else to go, inadequate hospice and palliative-care services, and stubbornly long wait times for surgery.

Dr. Simpson stressed that the answer to these woes is not necessarily more money but delivering care differently by, for example, shifting spending from institutional care to home care, and placing much more emphasis on prevention.

“Seniors today want to age well at home and in the community, and health-care professionals (and politicians) need to tune in to those aspirations,” he said.

The CMA poll, conducted by Ipsos Reid, surveyed 2,008 Canadian adults between July 20 and 24. It is considered accurate to within 2.5 percentage points, 19 times out of 20. The CALTC poll, conducted by Nanos, surveyed 1,000 Canadian between June 18 and 20. It is considered accurate to within 3.1 percentage points, 19 times out of 20.

 

© Copyright The Globe and Mail Inc. All Rights Reserved