Remembering to enjoy times with dementia sufferers

By Chloe Hall

Conventional definitions

Descriptions of dementia usually begin with a definition: it’s the progressive decline of normal brain function. This includes the ability to recall information and memories, problems with normal processing of information, and unexpected emotional responses, or even a lack of them. While dementia is common in older people it is not a normal part of aging. For example, forgetting recently acquired information can be a sign of the early stages of dementia. It can also be symptomatic to forget what you have just been saying or doing. Such characteristic lapses are unrelated to occasionally losing our train of thought, which may be the result of stress or tiredness. For instance, ‘why on earth have I come into this room?’

My Gran

I would like you to meet my old Gran. She was born in 1924 and grew up in north London. During WWII, she was a telephonist deep underground at the Holborn exchange. She married my Grandad, in 1951, and was a loving Mum to two children. She was cheerful, thoughtful, sharp-witted and highly organised.

In her mid-seventies she would sometimes forget that she had been shopping. The warden of her sheltered accommodation occasionally spotted her making her way along to the shops for the third or fourth time that day to buy another loaf of bread. Nor could Gran always remember where she had put things. Increasingly this made her feel puzzled and frustrated. Latterly she became mildly paranoid and started to hide her purse, bus pass and any correspondence which she considered might be sensitive. Over time we found her purse in the fridge, in the cupboard under the sink and in the bathroom cabinet. Bank statements appeared in the kitchen cupboard, while a pension letter was carefully folded and placed under a seat cushion on the sofa. Then there were her keys and the TV remote… Such disruptions to Gran’s daily life and routines were diagnosed as symptomatic of dementia by the GP. We discovered that there was a clear distinction between Gran being forgetful and being unable to manage daily tasks. It was very sad to witness her gradual decline and ultimate loss of independence, a reminder that when helping or looking after a relative with dementia remaining conscious of our own mental wellbeing is very important.

Self-help strategies

In the early stages of her illness, Gran tried out one or two self-help strategies which she felt would be beneficial. For example, when she could not find something she would make a cup of tea and then sit down. This would certainly have a calming impact although frustratingly sometimes Gran would forget about what she had forgotten. She also started to use little post-it notes. She dotted them about her flat and would leave one on her bedside table with a prompt for the morning. Although this might seem a chaotic way to go about daily life, for a time it helped Gran to manage. Yet an informal system of using notes has its own limitations and itself proved to be symptomatic of the creeping impact of dementia.

Lapses in memory

Occasional forgetfulness is of course an irritating part of a busy lifestyle for all of us, but a key symptom of something more serious is when habitual routines become compromised. We knew that things had changed when Gran forgot that we were coming over to see her, having telephoned a couple of hours earlier. And one morning at about 6.30am she came into her spare bedroom to open the curtains, forgetting that we were tucked up, having come to stay for her birthday. Interestingly, the GP was more interested in whether Gran could safely make a cup of tea than whether she could recall that Winston Churchill was Britain’s war time Prime Minister, although she did ask her a series of historical, political and cultural questions to help assess her cognitive function and recall.

Losing a sense of time

Gran also began to struggle with a sense of passing time. While most of us at some stage momentarily forget what day of the week it is, Gran wasn’t always sure of the month, or the year. Occasionally she sent two birthday cards to the same recipient. And so, gradually, Gran needed more support and finally formal nursing care to ensure that she lived securely without posing any risks to herself or to others in the flats.

Conversation and confusion

Gran never had too much trouble articulating words and forming sentences. This meant that she used to join in with conversations, though not always in a relevant way. Those tended to go round the houses and return to the original point. Funnily enough it was her failing eyesight that quite often led to verbal confusion. For example, in the summer months we used to sit outside at the nursing home. Gran, wrapped up in her blanket, would peer up at the roof and regularly enquire who was standing up on the apex. We didn’t have the heart to say that she was looking at the chimney stack. We would nonchalantly reply that it was Mr Chimney Pot. Gran would appear rather displeased and demand that he should come down at once!

A possible approach

Within this warm snippet of life visiting Gran lies one idea of how it may be possible to approach dementia. At times it may be appropriate to enter the world of the dementia sufferer, to go along with their ideas and remarks rather than to attempt to lead them back into our reality. Perhaps it is a way to avoid unnecessary emotional upset and confusion. It can also lead to some surprising places and unexpected moments of humour, not at the expense of the sufferer, but in the context of the absurdities which we encounter as we head through life’s challenges.

Dementia is not about absolutes

Although verging on a contradiction in terms, Gran seemed lucky to me because her dementia did not inevitably make her feel, or seem, miserable. She lived for another eight years after those early symptoms and continued to enjoy aspects of her life. And because of that there were moments when life with dementia was not as bleak as it was possible for us to assume it was going to be. Dementia is not constantly about absolutes. Of course, there are moments when things seem grim but there are others when it is possible to feel positive and enjoy time together. And those times become lastingly reassuring.

Adjusting expectations

As she changed and the dementia progressed Gran began to confuse her son with her husband, who had died thirty-five years previously. We did our best to play along with this turn of events and were surprised with the sense of comfort that it seemed to bring Gran. We didn’t consider that we were in some ways misleading her, we were simply hoping to avoid embarrassing or upsetting her. I don’t remember an in-depth discussion with my parents, but I do vividly recall my Dad explaining to me, as a seven year old, that one day she might forget who I was, but that wouldn’t mean she’d stop loving me. In the end I was very lucky because even if Gran wasn’t sure of my name, she always knew that I was the little girl who used to visit her every week, and she used to brighten up when I peered around the door to her room. She would ask me about school or skating. And then she would ask me about skating or school. And when the tea came she would purposefully munch her way through the biscuits only to ask if there were any biscuits, or she might wonder when the tea was coming. Yet she still laughed and smiled, and I feel that she enjoyed our time together, as did I. I used to look forward to our visits to her nursing home every Sunday. Even today, I still feel completely comfortable at the thought of visiting someone in similar circumstances. I do appreciate that it must have been harder for my parents to witness the changes in Gran’s behaviour, but for me, she was always very special, eccentric and fun.

Your next visit?

Perhaps visiting someone with dementia is about how best to make them feel. Naturally there are moments when we want to play it safe and talk about the weather, or the traffic on the roads, or the staff on duty, or guess what was for lunch. However, you can introduce events from the distant past, and we used to bring a photo album to prompt those types of reflections. Weddings or birthdays often inspired warm recollections. It didn’t matter whether we looked at the same photos the following visit. And it certainly didn’t matter if any details of family history sounded rather different from the last time. I accepted and grew to admire the eccentricity which became a part of Gran’s personality. Just because she behaved or responded in unexpected ways, I still used to enjoy her company, sometimes in spite of dementia and sometimes because of it.

Aim to enjoy time together

So, yes, dementia is progressive, and it certainly affects the ability to remember and understand everyday information and routines. And, yes, dementia gradually changes ways people perceive and communicate. Their ability to formulate and articulate ideas and to have a meaningful discussion will also change. Consequently, we need to remain respectful, listen extra carefully, and employ plenty of patience. Yet we also need to feel reassuringly positive in our interactions and aim to enjoy our time together.

Signposting

The NHS provides a wealth of resources and support for people with dementia, or Alzheimer’s disease. These services include talking therapies, peer support and advocacy.

Side by Side is Mind’s supportive online community for anyone experiencing a mental health problem. It’s a powerful thing to connect with someone else over shared experiences. Side by Side is an online community where you can listen, share and be heard.

HFEH Mind’s blog offers advice on a variety of mental health issues. Sometimes just getting some extra information can prove to be a positive first step.

Our mental health services directory, Wellbeing West London, can help you find mental health services near you.

Our Safe Space service may also be able to help. We provide an alternative to A&E for people experiencing a mental health crisis, and can give advice, support, or just listen.

Posted on: 7th May 2024