Dementia Centred

By Wendy Perry

August 1st, 2017

A place where I can feel at home

I have spent a lot of time in care homes.  Most of my adult life, in fact.  I am well acquainted with the joys and challenges of communal living, well, except for the communal living part.  Therein lies my blind spot.  You see, no matter how comfortable I am with the idea of care homes, I have never experienced them as a consumer.  Early in my career I created social programming for older people living in retirement communities and care settings.  Even though I was (and am) an introvert and shuddered at the thought that someday a bubbly activity coordinator might try to cajole me into attending the large group socials and activities that made up a large portion of the activity programming of the day, I still looked at involvement in group activities as the measure of whether someone’s activity needs were being met.  

But as I become more educated about the benefits of good design and as I start to recognise what really matters to my own wellbeing, I become more and more concerned about how I will fare if I need to live in residential or nursing care.  One of my holiday reads this past summer was Quiet: The Power of Introverts in a World That Can’t Stop Talking by Susan Cain.  The book was really interesting from a personal perspective as I am an introvert, but also from a professional perspective.  In the book Cain traces the rise in social value of extroversion traits like socialising and networking.  She also looks at how many people who struggle with these activities are frequently given negative feedback by others, as though their lack of desire to constantly connect with others points to some deep seated personal fault.  So what does this have to do with dementia?  It ought to have a great deal to do with the way we think about our services.   According to Cain at least three in every ten people are introverts. If that is the case, then approximately one third of the population may have a very different set of criteria for what helps them maintain their well-being. This started me thinking about how our residential and care services are often designed for extroverts. 

The idea that I might have to eat in a large dining room at a table with others that I don’t know (or don’t remember) everyday threatens to ruin what for me is a very meaningful activity.  The fact that I am going to tell the well-meaning staff at my care home that I don’t care to attend the combination monthly birthday party, accordion concert and children’s ballet recital is fine.  I might be labelled as self-isolating, withdrawn or depressed as a result, but at least I won’t have to be packed into a room full of people I don’t know pretending to enjoy something that I am not even a little bit interested in.  And when I am asked to attend the outing where everyone in the city turns out to see the Christmas lights turned on, I will politely decline while privately breaking into a cold sweat at the very thought.

However, what happens to me when I can’t communicate the way I used to? Will people take me to that event I don’t enjoy?  What about when my mobility is impaired and I have to depend on a carer noticing my distress and assisting me back to a space that is quiet, where I feel safe and in control?  What if I do not remember and recognise the people I sit with each day to eat?  Will staff think I am not eating because I am not hungry? Someday when I need the support of others to help me to maintain my wellbeing, then I need them to know not just whether I like an activity or not, I need them to understand what makes me comfortable or uncomfortable about the setting in which that activity is taking place.

I spend quite a bit of time these days talking about the concept of meaningful activity, and it is more complicated than you might suspect.  It certainly is a lot more complicated than it seemed when I was putting together calendars of events for the residents in my care home.  Whether an activity is meaningful to me, as an introvert, may be influenced even more by setting than by the activity itself.

So is there a care home for someone like me? Someone who struggles to maintain my good humour in the face of endless company and social events?  Will my needs for privacy and control over my environment be supported?  Will my behaviour be labelled as anti-social, and my anxiety in groups be seen as requiring medication?  How could someone like me live in a communal setting like a care home with any degree of comfort and well-being?

These are the questions I grapple with when I develop Meaningful Activity courses, when I facilitate courses exploring the reasons for distressed behaviour, and these are the issues I think about when teaching on our Intersection of dementia + design, and Effective Leadership courses.  These are fundamental considerations in the support of people living with dementia and for the development of services both new and existing.  For our interventions to be therapeutic, and to genuinely promote well-being they need to be based on honouring the preferences of the individual, who they are, who they have been, and how and where they feel most comfortable. This should be the goal for the introverts among us as well as the extroverts.

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