Further thoughts on Dementia

dementia friends

The final day of my last university module was spent taking part in a Dementia Conference. As this is my particular area of interest, I had very much looked forward to attending the event. The speakers included a carer and a person living with dementia. The day was fascinating and illuminating, and I enjoyed it immensely.

The Carer’s Perspective

One of the speakers was a lady who cared for her husband who was living with dementia. As the lady recounted their story – of struggles and humorous episodes – I was very emotionally touched by what she had to say, and at times had to compose myself and blink back the tears. The speaker’s patience and kindness were especially evident, but so too were her frustrations and ordinary everyday ‘non-perfect’ human qualities. The lady worked extremely hard to care for her husband, and had completely changed her life by giving up her former job in a position of high responsibility, in order to take care of the person that she loves. As well as her husband becoming a different person, the lady spoke about her own loss of identity – through her former role as a career professional and as a wife. It was really quite sad, but the change was inevitable, and it therefore had to be embraced in as positive a way as possible.

One of the speaker’s main messages to our audience was that it was really difficult to obtain an initial diagnosis of dementia. Many professionals discount symptoms or misdiagnose them as depression. The lady was also keen to stress how the voice of carers is often completely ignored, perhaps on account of their non-healthcare professional status, and ironically, despite carers often being experts on the person in their care. The lady additionally felt that people were often given no information following a diagnosis, and were just left alone to get on with their lives, as though nothing was different. This must be a very disempowering situation, and one that could lead to very negative outcomes. At this point in the conference I made a mental note to myself, to always support the people in my care and their families, and to keep them fully informed about what is going on in the short term, as well as what to expect in the long term.

The Person living with Dementia’s Perspective

A lady living with early-onset dementia (a pre-65 years of age diagnosis, which can be as young as 40) bravely addressed our audience, in order to share her story. Due to the unreliability of her memory, she read from a pre-prepared script, which was suitably lengthy, informative and interesting.

The lady had formerly worked in a highly responsible job, and had started to notice problems with remembering things and repeating herself within her career role. After her diagnosis, the lady made the decision to give up her job, despite not being forced to by her employers. She decided upon her own considerations and realistic self-honesty, as she did not want to make any grave mistakes and end her career with disaster. This decision must have been really hard to make and to accept, but to partially counteract it, the lady positively decided, at this point, to do all the things that she still wanted to do, like travelling, before her decline becomes too restrictive.

The lady explained how her life remains full through involvement with dementia groups and by socialising with other people living with dementia. The negative side of her experience has mainly come from other people’s perceptions within the general public. For example, a shop assistant was irritated because the lady took a long time to get the right money together, and the assistant apologised to the customer waiting behind, rudely pointing out how long the lady was taking. The other customer apparently joined in with the rudeness by agreement and general sighing. In a state of growing agitation, the person with dementia meanwhile, dropped all her money onto the floor and must have felt so embarrassed. What a terrible episode this must have been for her, and sadly this was unfortunately not an isolated incident.

In order to help with daily life, the speaker explained that she does have a badge stating ‘Please be patient, I have Alzheimer’s’. For personal reasons however, she chooses not to wear it; perhaps because of wanting to avoid people’s pity, patronising comments or just being treated differently. Bearing such incidents in mind, the need for developing dementia friendly communities is compellingly clear. As dementia is on the increase, the general public desperately need to be educated about the condition and how they can help. To alleviate ignorance, discrimination and stigma, public awareness is vitally crucial.

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In fact, this final point above reminds me of a comment that the speaker, who is a carer made: she said that some people that she and her husband knew, before his dementia diagnosis, now crossed over the road in order to avoid them. She felt that they were probably too embarrassed to talk to them, and they may well be afraid of dementia as a condition. The lady expressed a belief that, for many people, dementia is the new cancer. Before much investment in research, resulting advances in treatment, routine screening and increased public awareness, cancer used to be a particularly feared disease, which was often akin to an actual death sentence. Although there is still plenty to be done, recovery from cancer is now generally much improved, if detected early. As dementia currently stands however, there is no cure. Dementia is a progressive disease which commonly declines over 10 to 15 years, and eventually leads to death. Consequently much of the public are afraid of dementia, but like cancer, we must not give in to it. Until a cure is found, we must help people to live well with dementia. 10 to 15 years is a long period of time, and the person living with dementia is still there inside. Sometimes it is just a little bit harder to find them! Improved knowledge, the development of effective communication techniques and acceptance are key. If you are not already, I would urge any reader to become a dementia friend, and to see how you can help people living with dementia. Only together, can we make our society dementia friendly.

dementia friends

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.