Living well with dementia

       Diagnosed with dementia (probable Alzheimer’s) in her early 80s, I first met Ana when she was 84 years of age. Unique in her way of life, Ana had lived on the same section of land nearly all her life. What is more, she had lived alone for over 35 years in the house she had built for herself and her mother over 40 years previously. She had no immediate family, but friends who knew her well and supported her, were of the opinion that, despite her age and failing memory, it would be best if she could stay in her own home. I used to call on Ana, to make sure she was safe and well and to help her shop for groceries. In those days, a meal was delivered Monday to Friday by ‘Meals on Wheels’ and Ana would stretch that one meal over lunch and dinner. She also had a caregiver who came in two mornings a week to help her shower. On other days she would get up and dress by herself before preparing her breakfast which consisted of cornflakes, a banana, and a pot of tea. Another caregiver came in on Saturdays to check on her, otherwise she fended for herself.

 So began a relationship from which I would learn a great deal about the intricacies of dementia. For instance, people with dementia are often said to be confused, but exactly how does one define confusion? The Collins Concise Dictionary (2001) defines it as “lacking a clear understanding of something, mistaking a person or thing for another, bewilderment, lack of clarity, and disorder” (p. 184).

Image of Portrait of Una Platts used with
permission from Auckland Gallery

This definition and others like it lead us to think that people with dementia live in a state of bewilderment, and their actions or responses are always muddled somehow. In my dealings with Ana, I found misunderstandings or ‘confusion’ could easily be rectified if information was put into context. This served to refresh knowledge that was previously known but had been forgotten. Alternatively, it may be that presenting the facts in a simple and straightforward manner enabled Ana, who was very astute, to use her innate sense of judgment to make rational decisions.

     In trying to work out her likes and dislikes, I asked Ana one day if she had previously done her own cooking and housework. She replied “certainly not if I could help it.” When asked what she used to eat she said with a smile, “An egg thing.” “What’s an egg thing?” “An egg and anything in the cupboard.” With her declining capacity to care for herself, these skills, or lack of them, took on a new significance which is why her friends sought help from a community support service. However, all too often other people (caregivers) assigned to help Ana wanted to clean the house, but that was not at all what she wanted. Ana’s home reflected her passion for painting, portraits and reading. She liked it as it was and she would not tolerate anyone trying to change her way of life.

Instead, Ana wanted to engage in conversation, she derived great pleasure from talking to people and was always interested in hearing about other people’s life. She was an articulate and accomplished raconteur who could talk to anyone. In particular, she liked to reminisce and, given the opportunity, to talk about art. Her knowledge and skill were obvious and she could usually remember significant detail when it came to art. Alas, the fact that she often told the same story over and over again, or asked the same questions repeatedly, was a trial to many caregivers and they would leave because they lost patience with her ‘confusion’. Consequently, Ana’s support system was unreliable, and what was worse, often those who came upset her because they wanted to enforce their values in her home. They didn’t understand Ana’s needs and underestimated her capacity to make decisions.  Insights such as these made me realize how wrong it is to judge people with dementia and more, how social perceptions of dementia impact on people’s ability to live well with dementia. Ultimately, my experiences with Ana took me on a journey that I would never have anticipated.

I look forward to continuing this discussion with you! Please feel free to offer comment or question.

Grace O’Sullivan

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