Alzheimer's Disease is, in many ways, the worst thing that can happen to anyone. The person we love and know slowly disappears. Spirit of the West singer John Mann describes his own progressive dementia as fading into a "numbing white fog [or slowly slipping behind] a white wall, an empty white wall."1 Mann was diagnosed with early onset Alzheimer's in 2014, when he was 51. Jill Daum, his life partner, says, "Things just get harder and you have to constantly adapt to it getting more and more difficult — and the person you love getting farther and farther away."
She speaks for many people in a similar situation. For decades, an Alzheimer's diagnosis has been an irrevocable sentence, like watching someone go into exile from which they will never return. Alzheimer's Disease and related disorders (ADRD) affect approximately 47 million people worldwide, according to Alzheimer’s Disease International. About 4% of people between 65 and 74 years, and 30% of people over 85 years of age have Alzheimer's. There is no known cure, although many drugs and treatments have been tried, and billions of dollars have been spent on research2.
At the start of 2017, though, there is hope on a number of fronts: caregiving networks are getting stronger, care available is improving all the time, and research in various areas is pointing to new treatments. There are even several possible cures in the works. Here is Comfort Life's look at the state of Alzheimer's, for January 2017.
Dave Kelso watched his mother die of Alzheimer's Disease. Kelso's father was the primary caregiver, and caregiving took its toll on his dad, who also died too soon. Kelso was a marketing executive for a downtown Toronto agency who didn't know enough about the disease to help out his parents, but he also realized there was not enough help and support out there. He decided to do something about it, using his marketing smarts and industry connections to create AlzLive, a rich resource for caregivers, funded largely out of Kelso's own pocket. "If I’d known as much about the disease as I know now I would have [been able to help more]. That’s a big reason why I’m doing this."
While there is some money spent on research and caregiver support in Canada2, the onus remains largely on Canadian families to provide care and learn how best to help their loved ones. "You know it's amazing," he says, "Alzheimer's costs society more than all other top 5 killers combined, but less money is spent on Alzheimer's research than any of those." Family caregiving (like that given by Kelso's father) saves the government billions of dollars every year. "And there's not really enough help for these caregivers", says Kelso.
Kelso notes that Canadian websites and government bodies offer too little help for caregivers, where other countries (notably Australia and the UK) offer extensive resources for caregivers. "Look up the Alzheimers society of UK: they are far ahead of us here in Canada in terms of content for caregivers… They have a 132 page guide, specifically for caregivers." To be fair, caregiverexchange.ca offers a variety of resources including an Alzheimers guide, and alzheimer.ca does have a list of resources for caregivers.
But Kelso's site, alzlive.com offers over 1,000 pages of news about the disease, personal tales from caregivers, and tips on everything from finances to taking care of yourself; it includes written content, a library of videos, and other media. All of it is focused on making caregivers' lives easier.
Kelso says meetings with other groups have been fruitful, and he is confident that there is a growing movement in Canada to bring caregivers together as an important resource for each other. "We think we're at the forefront of that movement." Offering care is a growing market "but people of above average means is the common market of this growing industry... the middle class and lower are getting left behind, and if people can reach that market, it's much bigger."
Memory care is an area that is seeing improvement on a number of fronts. One retirement home management company ahead of the curve is Schlegel Villages, which houses over 2500 seniors across the province of Ontario. Schlegel works with the University of Waterloo's Research Institute for Aging to apply the latest research into providing up-to-date care for all seniors including those with Alzheimer's and other dementias. It offers a unique "Living in my Today" program, "a comprehensive dementia-care philosophy and training program that builds on the belief that there is no one answer when it comes to supporting an individual whose life experience is changing because of dementia." Schlegel also offers staff trained in the Gentle Persuasive Approach, a special course that prepares caregivers for the negative aspects of Alzheimer's Disease, including outbursts and worse, focusing on gentleness and patience.
An increasing number of retirement homes specialize exclusively in memory care, such as Forest Valley Terrace in Orleans, Ontario. Forest Valley's onsite care is provided by a Designated Resident Specialist (DRS), with each DRS assigned to a small group of residents with whom they become uniquely familiar. Care extends to bathing, showering and incontinence, and residents have the comfort of dealing with the same person regularly. Care facilities at Forest Valley include unique enrichments like memory boxes outside each resident's suite and Life Skills Stations throughout the building, where residents' minds are stimulated through hands-on activities.
More about memory care
On the home front, adult day programs are a useful resource available in an increasing number of cities across the country. There is a variety of government support for this. Programs may be municipally or provincially run, but there are also private programs that may meet more regularly, with increased availability and reliability. Programs are ideally suited to encourage social activity that breaks the isolation and depression associated with Alzheimer's. Activities can include everything from board games and puzzles to pet visiting and fitness. The interaction with others is beneficial and this also gives seniors and families a chance to learn from professionals including personal service workers (PSWs) and those with other specialized training.
For example, Mosaic Home Care Services in Toronto, offers a community resource centre, where they host a variety of fun and education activities for seniors (including those with Alzheimer's). These are, in fact, accessible to all, says Jane Teasdale of Mosaic. "They help older adults remain healthy, independent and socially connected... and provide a connection point for those who may be isolated and alone."
Adult day programs are part of the broader category of respite care programs that are often government supported. All caregivers should be making use of government support that helps them provide the best care they can for loved ones. Learn more about respite care near you.
Dare we say it? In 2016, there was hope for a cure for Alzheimer's Disease. Until now, there have been more than 400 drug trials of ostensive cures, with nothing ever shown to combat disease. This year, though, reports of successful trials were genuinely hopeful.
In late August, The Telegraph and other news sources reported on a new drug shown to remove amyloid plaque. This sparked major interest from experts from around the world and was hailed by some as the best news for dementia in 25 years. The drug, Aducanumab, is an antibody that "robustly reduced amyloid pathology in a small group of people in very early stages of the disease"3 The purported reduction of amyloids is strikingly unique in the history of research. Although hopeful, the drug has not gone to phase 3 clinical drug trials; phase 3 is the definitive test of whether or not results are indeed meaningful, as noted by Oxford University's Gordon Wilcock, quoted in the Independent.
The month before that (July), it was reported that a vaccine had been tested on mice; this vaccine "targets both beta-amyloid and tau proteins linked to the disease." Another report around that time showed that canabinoids (an active ingredient in marijuana) can also promote the removal of amyloid beta.
In November, 60 Minutes reported that doctors can now tell which family members are genetically predisposed to developing the disease (knowing, as we do, that there is a genetic component to Alzheimer's). Family members with the highest genetic predisposition can be given an amyloid inhibitor to stop progress of the disease before it begins. The full text of the report is here. (The piece also precipitated viewers sharing struggles and heartbreak.)
Those are just some of the beacons of hope in the fight to finally defeat Alzheimer's. There is further hope to come, you can be sure.
In the meantime, novel treatments are also on the horizon. A study published in Radiology recently, investigates the relationship between a protein called NT-proBNP and heart and brain disease. The study shows that new discoveries about the protein could help reverse brain diseases including Alzheimer's. Futurism.com notes that the study is still in the early stages, but it has promise. Other recent news included improved understanding of the therapeutic value of light therapy, as covered in a radiolab.org podcast. Hope lingers on for those facing the disease.
Medical science has made great strides in fighting other dreadful diseases like cancer and heart disease. There is reason to believe that Alzheimer's Disease is next on that list of diseases that humankind has "beaten back". If you want to get involved in helping find a cure, alzheimer.ca offers a list of resources that can help families and seniors participate in clinical trials and other research.
Resources and Sources
1Mann, John. Spirit Unforgettable. Aside from his Alzheimer's Diagnosis, Mann fought cancer into remission in 2011. Learn more at johnmann.ca.
2Doyle, Elizabeth. "Is Canada investing enough in dementia research?" Canada spent 52 million dollars in 2016 alone (although this is not enough, according to some critics, as seen in the article).
3Dr. Tara Spires-Jones, interim director of Edinburgh University’s Centre for Cognitive and Neural Systems as quoted in a story from The Independent.
- Jim Huinink, Comfortlife.ca