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


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.


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.


Our Ageing Population


Last Thursday evening I watched episode 2 of BBC2’s Protecting Our Parents programme, and as the elderly and their mental health is something that I am passionate about, I thought that I would share an outline of the programme’s content.  Although I had caught the first episode the previous week, I found the last instalment particularly poignant, as it was exclusively focused on a married couple, Kathleen, aged 80, and her husband, Leonard.  Kathleen and Leonard were both clearly very much in love, and it was perhaps this observation in general, that made their story quite heart-breaking to watch.  The couple had been married for 60 years, and Leonard still recalled, with obvious fondness, Kathleen’s beautiful hair when she was younger.

Kathleen was recovering from a kidney infection in hospital, and desperately wanted to go home.  Her husband, Leonard, was missing her terribly, and she, in turn, I think was missing him.  The problem with Kathleen’s return however, was her constant habit of calling ambulances.  To date, it had cost the health authority £57,000!  Kathleen’s general reason for phoning was because she needed assistance with being moved in bed; Kathleen was uncomfortable, and it was still to be some time before her home-carers were due.  The reason for phoning was for anything, except for a real emergency!

Before Kathleen could go home therefore, the social workers needed to make arrangements that would alleviate the risk of her constant phoning of 999.  The hospital was keen for Kathleen to go, as her bed was costing them £310 per day, and was moreover required for someone who was more in need than Kathleen.  To help determine Kathleen’s mental capacity, a Consultant Psychiatrist questioned Kathleen about the reasons behind her ambulance calling, but she clearly denied all knowledge of ever making the calls.  The psychiatrist carried out a mini-mental state examination, first asking Kathleen to repeat and remember three objects – a lemon, a key and a flag.  Kathleen was then asked to say the days of the week backwards, which she managed to do, but was then asked to recall the three objects.  She failed this last task.  The psychiatrist concluded that Kathleen had genuine memory impairment, and therefore lacked full capacity.

It was interesting to note that the social workers did not agree with the psychiatrist’s conclusion.  Kathleen seemed fully lucid when they spoke to her about the ambulance calls, and she seemed to comprehend why they were wrong.  The social workers decisively concluded that Kathleen fully understood about the emergency calls.  In order to minimise the risk of reoccurrence, the social workers decided to arrange two extra care visits, per day, to Kathleen and Leonard’s home.

On the day that Kathleen was due to be discharged from hospital, it was found that Leonard had disappeared.  Eventually it was discovered that he was also at the hospital, suffering from a twisted bowel.  Kathleen’s return for that day was therefore in jeopardy; particularly on account of her being alone and isolated once she had returned home; and therefore perhaps, as a consequence, she may have been more tempted to call the ambulance again.  However, the discharge went ahead, with two carers attending to meet her at home.  The bed in the hospital was just costing too much, and evidently was more costly than the expense of two home-carers.

In the morning, Leonard arrived home with plenty of painkillers.  Kathleen and him-self were so happy to be reunited.  Their affection was candid and touching, and had the effect of making the observer feel so warm and empathetic inside.  Kathleen talked about never wanting to give up her home, and moreover never wanting to go into a care home.  Leonard commented that he would like to die first, as he could never cope with being on his own and was not emotionally strong enough to cope without his wife. 

A month later, it was revealed that the emergency services had been called forty more times!  Kathleen was demanding 24 hour care in her home; not in a care home.  The social workers visited her to discuss these issues, and said that she could have home care if she was willing to pay for it.  Kathleen instantly rejected this, as she felt that her-self and Leonard had paid enough in taxes and national insurance contributions throughout the years.  The social workers’ response was to offer Kathleen, and Leonard, a nursing home; the social workers desperately wanted to keep them together, which was only morally right.  Kathleen was adamant though, that a care home was not going to happen; she was intent on staying in her home.

Kathleen was upset, and so her GP came to pay her a home visit.  He brought along a different psychiatrist whom Kathleen had met before.  The GP was worried about Kathleen’s incontinence and pressure sores, and how having occasional care visits was not really addressing these issues.  The psychiatrist performed a different type of mini-mental state examination, and Kathleen did not respond very well as she was clearly emotionally upset.  Kathleen told the psychiatrist that she felt a nuisance.

On leaving the house, the psychiatrist told the GP that Kathleen’s mental capacity was definitely questionable.  A ‘best interest’ decision was mentioned for the first time. 

We later learned that Kathleen went back to the hospital, having contracted pneumonia.  Leonard, in his isolation, telephoned the ambulance and told them that he could not stand being on his own.  Leonard later had a fall and was admitted to hospital himself. 

Six months later, it was definitely decided that Kathleen no longer had mental capacity.  Kathleen and her husband had very different care needs, and it was hard to practically unite the care plan and the couple as one.  In response, a multi-disciplinary team meeting was held, with Leonard in attendance, on behalf of him-self and Kathleen.  Everything was carefully explained to him, and he had several opportunities to put across his views.  Leonard was happy to go along with the nursing home plan, because him-self and Kathleen would remain together, and she would also be able to receive the 24 hour care that she so desperately needs.  Leonard knowingly predicted however, that Kathleen would not comply with this option, and of course, knowing his wife for sixty years, he was absolutely right.

Total overnight care was another option that had been previously mentioned; perhaps more as a compromise in meeting Kathleen half-way.  At the end of the programme therefore, we learned that Kathleen had gone home with Leonard.  Kathleen was now receiving eleven visits each day, and this presumably, included overnight care.  In the short time since Kathleen had been home, the ambulance had been called thirty-eight times, and there had been visits to Accident and Emergency on several occasions.

It seems that it is only a matter of time before Kathleen will be forced to go into a care home, albeit with her husband.  The ambulance and care-worker costs combined must be far more than the expenses that are charged in a care home; and to add weight to the argument, desperately ill people, who need the emergency services, are potentially having their lives put at risk. 

In an ever increasing ageing population, it seems that stories like Kathleen and Leonard’s will sadly become more common.  It must be so hard to accept some of the changes that accompany the ageing process; especially when you have shared your life and home with a partner for over 60 years.  It is up to us as nurses therefore, to offer the elderly compassion, care and understanding.  We must try to make what is potentially a difficult journey, just a little bit easier, with some heart-felt kindly words and a good measure of empathy.   


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OU on the BBC, Protecting Our Parents




Protecting Our Parents