Dementia is a puzzle that affects far too many individuals and families today.
Its pathology is still poorly understood; it has co-morbidity (can have more than one disease attached to it); it may be neurological or vascular; the build ups of amyloid plaques that were thought to be the definitive marker of Alzheimer’s are now in doubt; and while it is most common in the elderly, it is not confined to that population.
Dementia is enigmatic and a cure is not proving simple.
Both my mother and my mother-in-law died of dementia-related illnesses and I can testify that they are indeed difficult afflictions. However, it wasn’t until the Kitimat General Hospital Foundation and the Kitimat Valley Housing Society began our dementia home project that I began to see at least one bright light in the dementia world – proper care for those living with dementia.
There have been dramatic changes made in the philosophies and practices related to memory care over the past 25 years.
We are moving from risk aversion models, where every action is designed to reduce risk to residents, to models that focus on the quality of life enjoyed by those same individuals.
We are shifting from paternalistic perspectives that presume “expert” wisdom to ones that seek to understand how each resident is perceiving his or her world.
The result is far less medicating of residents, dramatically fewer incidents of patient violence and significant improvements in both staff and resident satisfaction.
Most discussion about the changing world of dementia care begins with “that Dutch thing, you know – the village.” Indeed, that would be The Hogeweyk located in Weesp, a suburb of Amsterdam, Holland.
It is a collection of 23 houses that are home to 123 dementia residents. If you have never seen The Hogeweyk then a quick Google search will take you there and it is worth a visit.
It creates a neighbourhood of ‘homes’ and shops that bring a semblance of familiarity to residents.
Each ‘house’ is a small entity unto itself and as such has an autonomy not common in typical institutions.
Regardless of their memory deficits, the residents participate in meaningful daily activities that are neither patronizing nor meaningless.
It isn’t without its critics, but Hogeweyk introduced a new conversation to the world of dementia care. Canada’s first Hogeweyk-variant, called The Village, is set to open in Langley in April 2019.
Unfortunately, such a ‘village’ demands economies of scale that are difficult in smaller, more rural communities.
Enter the Green House Project, a U.S. non-profit begun by Dr. Bill Thomas in 2001. Thomas postulates that people, regardless of their age or memory challenges, should live in homes, not institutions.
Green House homes are small (ideally for no more than 10 residents) and focus on developing relationships among the residents and staff, relationships that are facilitated by the intimacy of a small home atmosphere, one that is difficult to obtain in a large institutional setting.
These smaller groupings allow residents and staff the opportunity to share a home atmosphere together. They share meals and, if the residents want, chores as well. It is a home.
Through these interactions, staff gain important insights into who the residents of the home are, their pasts and how those histories affect their daily perceptions of life around them.
From England comes Dementia Care Matters, The Butterfly Home, a model developed by Dr. David Sheard. It shares many of the principles of the Green House Project, but whereas the Green House Project deals with all kinds of residential care, the Butterfly Home is specific to dementia care.
It has been adopted in the Region of Peel, Ontario, and in six locations in Alberta.
“It means connecting emotionally, which, due to dementia’s impact on logic and memory, can be a powerful way to connect with people in a meaningful way,” says the Region of Peel of their Butterfly Home.
”It means making the house truly feel like home, a place we could welcome family and friends. By meeting people’s physical and emotional needs, we never forget they are complex, valuable and feeling beings. This, to us, is how we become person-centred.”
These are but three of several encouraging efforts that are directed at bringing a change to the lives of the people living with dementia.
The practitioners of these models have in common the desire to see people with dementia, not as clinical problems and collections of symptoms and problem behaviours, but as individuals with histories and desires for respect and meaning.
These models are the cups-half-full, employing strategies that focus on what people can do, not on what they cannot do. They seek understanding amidst confusion and always focus on quality of life. This is the ethos we will bring to the dementia care project in Kitimat.