When someone receives a diagnosis of dementia, one of the most common questions their friends and family have is:
“What happens when my loved one no longer remembers me?”
In this fourth instalment of
Exploring Dementia with Professor Graham Stokes, Graham, the Director of Memory Care Services at HC-One, shares his insight into why people living with dementia may no longer remember their loved ones and how friends and family can best approach the situation when it happens.
One of the biggest concerns voiced by friends and families of people living with dementia is: “What happens when my loved one no longer remembers me?” Why is it that many people living with dementia become unfamiliar with those closest to them?
As dementia advances, memory loss results in the familiar becoming the unfamiliar. This not only applies to places, but it also means that even people who have been known and loved for years; partners, siblings, children and close friends can be rendered strangers. Not recognising familiar people does not happen in all types of dementia; it is more common in Alzheimer’s disease for instance, and rarer in vascular dementia.
Aside from memory loss, there is also a part of the brain that is responsible for recognising faces and if this is damaged the person living with dementia experiences ‘proposagnosia’. This is nothing to do with forgetfulness and is sometimes referred to as ‘face blindness’, but of course voices are still recognised and, in these instances, relationships can be sustained by words and conversation.
How can loved ones understand and come to terms with the changes experienced during the later stages of dementia?
Watching a loved one move through the later stages of dementia can be one of life's toughest and most heart-breaking challenges, especially when they no longer recognise those who once meant everything to them. Yet, while this can be upsetting for families, it is also distressing to the person themselves. Dementia is never solely about memory losses and intellectual difficulties. There will often be emotional responses to these debilitating, frustrating and frightening changes, and at times these reactions can be extreme. Even attempts to remind the person who the people in front of them are can be baffling and frustrating for people living with dementia.
A short case story: John and Barbara
John did not know how dependent he had become, but Barbara knew the difficulties her husband faced. When he needed the toilet, he would always head upstairs, but having reached the landing his dementia was an unforgiving companion. He could not remember which door to open, and once inside he would struggle to adjust his clothing. But not to worry for already Barbara had reached his side, yet her presence was not reassuring to John for he no longer recognised his wife.
Barbara was met with hostility. Why was this woman interfering with his need for privacy during this most personal act? He would shout at her to “go away” and lash out. “It’s me, John”, she would despairingly say. But her husband of more than thirty years would just glare and curse. Barbara was at breaking point. “Why is he doing this to me? What’s happened to the man I married?”
However, when the person no longer knows a loved one by name or relationship that does not mean there is no relationship and never can be, for there can be a new one, albeit of a different order. Not being recognised does not mean a person is necessarily forgotten. For some people living with dementia, the loss of recent memories, which are the ones that fade, fracture and disappear first, means they may still remember someone, but expect to see a younger person in front of them. In these instances, you can pull out a photo album showing you 20 or 30 years ago, and there you nestle in long-term memory and once more you are recognised.
That’s really interesting, Graham. So, how can people maintain their connection with loved ones if they struggle to recognise them?
Even when a person is beyond recognising others, it is still important to maintain connections with the person living with dementia, and to include and involve them wherever possible. Familiarity and support from people who know them best will help them feel safe and comfortable. Even if there is never a flicker of recognition when in the company of someone who holds them in deep affection, communication through tone of voice, facial expression and tender ways can trigger feelings of inner peace, comfort, and even happiness. This means they are better for being in the company of that person, even though they have no idea who they are.
A short case story: Eleanor and Geoffrey
Their relationship was now lost in the fog of Eleanor’s dementia. Geoffrey visited the care home every day and there was nothing. He was always there at teatime to help Eleanor drink a cup of tea, or eat a biscuit, but to no avail. He would bring more and more of her things in to prompt her to talk. He would show her photographs of their children, their shared moments, but there was not a hint of recognition. He might as well not have bothered for Eleanor had somehow developed the capacity to stare through Geoffrey, while glaring at him with nothing other than contempt. Geoffrey was buckling under the weight of his wife’s dementia. He wrote: “I am finding it very hard to get over what I can only say feels like the loss of my wife.”
I told Geoffrey it was no longer about supporting, caring, doing, it was just about being there. Not even talking. Just being close, sitting there, sharing a view, holding hands. Nothing more. “So no more doing, Geoffrey, just be there”. And unfailingly from then on, he was. Just there. No tasks to be completed; no questions; not even conversation. He was simply there.
Days passed and then, inexplicably but joyously while sitting together, Eleanor turned her head, looked at Geoffrey and smiled, and that was all he needed. He was doing something right. He mattered. It was to be days before she smiled again, but she did. These small signs of affection kept Geoffrey going.
Geoffrey knew that Eleanor did not truly know him, but that was no longer important. He was someone whose presence was comforting to her. While he may have occasionally worn a thin veneer of familiarity such belief was no longer required by Geoffrey to nourish his conviction that Eleanor still needed him. And this is how their story concluded. Geoffrey, loyal and tender, committed to never giving up on his wife.
So, what is the key message people can take away from this article, Graham?
As the journey of dementia is negotiated the nature of relationships change, but even as the end draws near a person with dementia is still ‘in there’, we just need to be with them in any way we can in order to stay in touch with the person who remains.
Professor Graham Stokes: an expert in memory care
Professor Graham Stokes is a clinical psychologist with more than 30 years’ experience in dementia care. He is one of the most influential people working in dementia in the UK and has been involved with many leading initiatives in his field. In his previous article, Graham explored how to recognise the early signs of dementia, which you can read
here.
Memory care at HC-One
Many of our homes at HC-One offer dedicated memory care services for Residents living with dementia. Our Colleagues are specially trained to care and understand the needs and aspirations of each individual living and to provide them with the kindest possible care and person-centred support. We also have homes offering nursing care for older people living with dementia, who have additional health needs that require care and support from qualified nurses.
For more information about homes in your area, please contact our friendly Careline team on: 0333 999 8699