I’ve been asked to write from a consumer’s perspective about whether I think the views of people with dementia could influence the design of residential aged care, and if there is a difference between the view of people with dementia and their families about what a care home should be like. It has been a difficult task, and is for now, still a work in progress. But I do have a few initial thoughts… mostly about what a care home should not be like.
There is little doubt the view of the family care partners versus the person with dementia are vastly different.
We want autonomy. They want us to be safe. .
We want freedom and a front door key. They want the doors locked to ‘know that we are safe’. We see and feel like this as being in jail.
We want to walk. They see our walking as wandering, and want us to stop wandering, seeing our desire to continue walking as a ‘challenging behaviour’.
By the time we probably do need residential care, we may not know we need care, and we certainly don’t want to be in care. If we become angry or upset about being ‘made’ to move there, we are viewed as having ‘challenging behaviours’, rather than people who do not wish to go and live with strangers, or leave our own homes.
We want to continue to live our lives, in our own homes, the place we are familiar with, and have always lived. However, we are sold the concept of residential care being our new home. So, if it is our new home, why are we are not given the key to the front door of our new home, or at least the back door, out to a garden. How can it be our new ‘home’, if we can’t get out?
On top of this, we are expected to live in a commune with strangers, and eat in dining rooms with people we have never met, and may not ever get to like.
We are told it is good for us to go to the activities room, and participate in the various (or not) activities provided, at the times on the printed timetable stuck on the door in our single room with our single bed. More often than not, these activities are just ‘time fillers’, with no inherent value other than socialising, and with people we may not consider friends.
Meaningful activities don’t only have to engage people, they have to have some value and inherent purpose, for them to be of any real benefit… a reason to want to get out of bed. This point is missed in almost all activity or life style coordinator programs that I have read about or seen. Activities are for the most part, simply ‘time fillers’.
And then onto the topic of our bedroom, in our ‘new home’. Yes, a single bed. If it was really our home, we would be in a Queen, King or at least a double bed. Oh, and this room, supposedly our personal, individualised private space, cannot be locked, nor do we have a key to it, and rarely does anyone knock to enter, they just come in when it suits them, We might be resting, or wanting to be alone, but no, when it is time to eat, or to be bathed, or go to an activity, we are disturbed, often without the courtesy of the visitor in ‘our home’ asking if it suits us.
At some other stage, I will think and have a go at writing about the views of people with dementia could influence the design of residential aged care… The whole topic is though, a real conundrum, as our safety is almost always put ahead of our rights to autonomy and to take risks, including the risk of staying in our own homes.