Exploring Advanced Dementia

Appropriately for Mental Health Awareness Week, I today attended a seminar which explored advanced dementia. The seminar was kindly hosted by a local hospice, and examined many concepts regarding the topic of dementia: including types of dementia and their features, the importance of getting to know each person with dementia as an individual, effective communication throughout the different stages of dementia, recognising that we might be the problem and not the dementia, and making environments dementia friendly.

A new concept for myself was the introduction of the Dementia Bookcase. This is an analogy which I found useful and apt; so please let me explain. Imagine a bookcase with four shelves, which represents the life stages of the person with advanced dementia. Childhood is at the bottom, adolescence and early adulthood is second up, mid to late adulthood is on the second from the top, and now – the present – is on the top shelf.

Now – the present

Mid to Late adulthood

Adolescence / Early adulthood

Childhood

Working from the top, the metaphorical ‘books are falling off’ and cannot be replaced; rather sadly like the brain cells of the person with dementia. The next shelf down, of mid to late adulthood, is now forgotten, and this is particularly hard for a carer / partner who has cared for the person with dementia – even worse for a second (later married) wife. On the third shelf, of adolescence to early adulthood, the person with dementia remembers going out to work as a milkman. He wakes up at 4:00 in the morning, and is desperate to get out, because he needs to deliver the milk. On the bottom shelf, as the person is getting nearer to death, he remembers being a child and may ask for his mother or father, and may well be concerned that they do not know where he is. If childhood experiences were bad, this stage may be emotionally difficult. At this final stage, spirituality becomes extremely important, and will allow the individual to form a vital connection with a thing that is special to them. Depending on the person, this may be through a piece of music – or singing or dancing, watching football or stroking an animal. Whatever the choice, it can be a joy to witness a person ‘coming alive’ in this way.

donkeys

record player

Another thing that really struck me today was a discussion regarding validation. Imagine a situation in which the person with dementia asks for their wife, but you know that the person’s wife is dead, and has been for 20 years. What should you do? Do you lie? Do you tell the truth?

If the person wants their wife, then you should validate the person’s needs by talking about her. “Tell me about your Sarah, where did you meet? Can you remember your wedding day? What was it like when you had your first child?” Talking about the person’s wife will bring comfort and a moment of happiness. They will feel that you really care. The person may well soon forget what you have just talked about, and may ask about Sarah again, or possibly they might not. Validation is surely better than telling a bare-faced lie? Consider for example: “Sarah is staying with her mother at the moment, but she is probably going to come and have tea with you tomorrow.” Or even worse, imagine the alternative, although it may be true? “Don’t you remember? Sarah died 20 years ago.” Imagine the person with dementia having to live through the pain all over again; it just seems so cruel. Validation is surely most appropriate.

On a warmer note, a concept called doll therapy was also briefly discussed. There was a story regarding a lady who longed to see her daughter, who was living far away in another country, and did not get to visit her mum as often as she would like. The lady believed that her daughter was still a child; and so when finding a doll in the residential home where she lived, the lady joyfully announced that the doll was her daughter – she had come back to her mum. The lady became totally attached to her newly found ‘daughter’, and took her around with her all of the day, slept with her at night, and ‘fed’ food to her at mealtimes. The doll became quite grubby with food around her mouth!

feeding doll

Some people may criticise this behaviour, and consider it inappropriate for a grown woman to be ‘playing’ with a doll. Doll therapy however, was clearly hugely beneficial for this particular lady. While it is clearly not ethical to treat a person with dementia like a child, through representation of the person’s former memories, doll therapy serves a completely different function. To live in the person with dementia’s world is a good and productive task of engagement. Approaches such as doll therapy can bring much happiness and benefit. The world of dementia may at times seem strange, but as discussed today, perhaps we are the problem and not the dementia? Person-centred, individualised care remains to be the main priority.

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