Last month, I had the pleasure of attending an ORCA educational day with our DelManor team. Dr. Brian Goldman started off the session and, whether intentionally or not, gave the crowd a reality check on the silver tsunami that’s heading our way… as well as the dementia epidemic that accompanies it.
There were some great learnings as well as frightening facts. Such as:
- In 2012, the World Health Organization declared dementia a public health priority.
- Canada has a dementia research and prevention plan, but is the only G8 country without a treatment plan.
- There is one diagnosis of dementia globally every three seconds
- In Canada, dementia affects 1 person in 10 over 65 yrs of age and 1 person in 3 over the age of 85. By 2040 it’s predicted that Canada will have 1.4M Canadians affected by dementia
- The annual cost of caring for dementia in Canada is $10.4B.
- Those aging are more hopeful of getting cancer, than dementia.
- By 2020, 13 countries will be “super-age.” By 2050 there will be 50 Super-age countries. Super-age is defined as having more than 20% of the population over 65. Currently Germany, Italy and Japan are super-age, to be followed by Finland, Greece and Sweden. Canada will be super-age by 2025. United States by 2030.
Most often, our aging population is brought up in reference to the impact that it will have on our work force and thus, our economy. The day at ORCA raised so many more concerns that we should all be cognizant of. And a large one, is the way in which this growing population chooses to live.
The reality is that along with multi-generational homes that top American developers like Lennar and Toll Brothers are starting to deliver (there are a reported 363,000 in Canada) that are an option for those of us with aging families aka “the sandwich generation”, vertical living is another consideration, whether in an independent, assisted or long term care environment.
Key word being “environment” with a huge ask of the panelists for everyone to immediately stop using the term “institution” and “facility,” and to stop considering these people as patients, but rather as “people.”Period. Point well taken.
Kingston General Hospital does an incredible job of keeping this top of mind with their “Nothing for us, without us” philosophy and has a Patient Expert Advisory” to ensure that “the patient and family’s voice is heard on councils and committees throughout KGH in order to improve the patient experience.”
This is an approach that needs to extend beyond hospitals. (Personally, I’d like to start one at our company, since we’re so customer-centric). Attending the conference wearing my “developer” hat, it was hard to tune out the logic while listening to the story of panelist Mary Beth Wighton, diagnosed with probable frontotemportal lobe dementia at 45 yrs old. Mary Beth urged the audience to remember that despite having the collective wisdom of architects, designers, developers etc., the real experts that should be consulted when designing communities for people with dementia… are those living with dementia. It’s common sense that’s not so common. Mary Beth is a founding member of the Ontario Dementia Advisory Group focusing on government policy, education and challenging associated stigmas with the disease.
We know that the built environment can have significant impact on our well being and that there are well known and agreed upon design features that are successful in environments that are dementia friendly. A few of the simple ones are avoiding busy wall paper, loud t.v. volume or oversized activity rooms. But that’s merely the beginning.
Laura Booi Gerontology Doctoral Candidate at Simon Fraser University shared insight from their Gerontology research center which as an area of study dedicated specifically to aging and the built environment . Some of the suggestions focus on concepts regarding familiarity and positive stimulation:
Familiarity – (1) Use non institutional imagery (2) Reduce learning new concepts. Don’t introduce elements in the environment that are foreign to the residents frame of reference. Think of current faucet designs etc, that could be confusing (3) View design from the perspective of the resident. At the end of the day, we go home. They do not.
Maximal Positive Stimulation – (1) Augmentative cues – promote full sensory experiences that orient people to time and place (2) Focusing – Help focus residents attention to the most salient characteristics in the room ex. a light coloured toilet against a wall with a dark background (3) Non-standardization – help residents orient themselves; do not make everything the same. This encourages way finding and independence. Example – make the doors of residents room a beautiful colour.
But we all know that the physical environment is merely one aspect. The relational component plays a very large part as well, and essentially they must work hand in hand, whether in your own home or a shared living environment.
When considering the built environment, we should also remember the extension and inclusion of amenities and services that are a part of it. Research helps determine which aspects best contribute to continued quality of life. The conference addressed the findings of Dr. John Zeisel sharing that the part of the brain that is “adventure seeking” is essentially one of the final portions of the brain to deteriorate. So when you think about residents in a large room, facing an over-amplified tv screen, it seems contrary to what might lie in their best interests. In fact, a recent article in the New York Times, discussed the “Age-Friendly DC Initiative” started by the World Health Organization studying the amenities that seniors in general are looking for. It highlighted Washington, as a great place to live for the aging population.
And while they may not have dementia – keeping Zeisel’s research in mind, makes you reconsider what type of amenities both interior and exterior, services and complete community you offer them. Their strategic plan identifies 10 critical aspects.
In fact, even since the conference, I continue to discover findings and research that are in search of improving the environment for those with dementia, such as the concept of “green exercise” and the positive impact of connecting with nature.
Yet, even beyond the immediate built form, there are other ways of supporting those with dementia. In the stark reality of not having a cure, awareness and inclusion of those with the disease is critical.
Laura is even active on pursuing a similar status for Canada’s own Qualicum Beach, in Vancouver Island.
Marc Wortmann, Executive director of Alzheimer’s Disease International in London, UK, made the analogy of this inclusionary effort to the disability movement where people campaigned for easier mobility. According to Wortmann, “Now it’s very normal if you build a new building that you look at how accessible is it. That’s what we want for dementia as well.” It makes sense. And if it doesn’t make sense at the current time, it likely one day will. Ms. Booi reminded the audience that “We will all one day go through life stages and not be the same person we are today, or were yesterday. Will not always be as abled.”
There are increasingly more housing and lifestyle options for people with dementia, and it’s surely not a one size fits all. Things seldom are. Whether someone chooses to live at home, or live with others, there are still cascading decisions to be made. If deciding to live with others, for example, there’s the major decision of living in an environment exclusively for people with dementia (there are even dementia villages – such as Hogewey, where people live lives as they normally would and engage in every day activities, yet within a protected community) or more of an inclusive setting, where people with dementia live among a diverse group of residents with varying levels of autonomy and assistance.
One member of the audience asked Mary Beth what she would prefer. Her answer was an inclusive one. Mary Beth also poignantly shared however, that while she understands the need to keep her safe and protect her from what may be an unaware, and as a result unkind society, she also rhetorically asked, “Who really has the right to lock me up?” Silence. Clearly, we have continued work and learnings to do.
As you can see, this is a conversation that is just starting. The population that dementia is affecting is expanding greatly and doesn’t discriminate. It touches more people, every day, every minute. It even crosses boundaries into the public realm, and sometimes reaches people who use their personal experience for good, such as Seth Rogen, whom most are not used to seeing in such a serious tone and manner.
We can only hope that there is strength in numbers and we can continue to work toward making the world a more aware and as a result, better and safer place for all. And as Seth Rogen says, while a “whisper is better than silence, it’s still not enough.” The voices that are addressing alzheimer’s need to get louder and need to be heard, in order for it to get the much needed attention that it deserves.
Feature image source: medicalxpress.com