The essence of the person

Some time ago now, a neighbour was asking after S and I tried to explain that, even though she can hardly speak or do much for herself she is still, demonstrably, S. The neighbour, who has had some experience of dementia said, 'The essence of S is still there!' This summed-up the situation so well that I was overcome with emotion and had to end the conversation.

I realise that we are very lucky in this respect. Some people with dementia turn into a completely different person who may be aggressive and spiteful where they were once friendly and caring, for example. Others may become such a shadow of their former selves that they are barely recognisable even to their loved ones. Some may reach a stage where they do not recognise their loved ones and may become suspicious and wonder why a stranger is in their house.

But S is still very clearly there. She still smiles a lot as she has always done (except for a brief period of about 3 or 4 months when she was tormented and paranoid). She still does her best to be helpful when she is being moved around from commode to bed to wheelchair or 'rolled' from one side to the other whilst being dressed. She still mouths the words to some of her favourites songs when we go to our weekly 'Singing for the Brain' and occasionally actually sings some words softly.

It wasn't so long ago that she clasped a carer's hand after something that had been done for her and said 'Thank you'.

She still understands a good deal of what is said to her, providing she is not too distracted by what is going on in her brain.

Most encouragingly, whenever we help her to stand and take a few paces (with a good deal of support) the determination she shows is unmistakeable.

She was always a quietly determined person  -  it's part of her essence.

The way the media portray dementia

We need a balanced view of dementia from the media. The smiley grey-haired little old lady and her smiley carer should share the billing with the tormented, paranoid, and violently aggressive person.

We need an understanding that, whilst some people suffering with dementia do die a horrible death others pass away peacefully.

We need it made clear whether they are talking about dementia (a condition which can have many causes) or Alzheimer's (which is now an umbrella term for a growing number of diseases).

In fact we need, and the media should help with this too, to put the word 'Alzheimer's' into the dustbin of history where it belongs, as an outdated description of lots of different diseases. Dr Alzheimer discovered a lot about a specific case of a disease affecting a person in middle age and I'm sure he would be amazed to learn that his name is used as to cover so many different diseases and, often, as a synonym for dementia, which is not a disease but a condition caused by many different diseases. No wonder people are confused about things when the name is used so lazily and ignorantly.

Perhaps most importantly, what cannot be overemphasised is that everyone is different and no two people with dementia have the same journey, though there will always be some similarities between them and  a lot of other people and reading about how other people and their carers are dealing with the issues as they arise can be tremendously helpful.

(We are coming to the end of Dementia Awareness Week in the UK and this post was prompted by some of the media coverage.)

NHS double standard for people with dementia in care homes

Thanks are due to the Alzheimer's Society for bringing to light what might well be described as a scandal:

https://www.alzheimers.org.uk/site/scripts/news_article.php?newsID=2599&_ga=1.208937239.428393088.1433590610

Whether anything will change as a result of this revelation remains to be seen.

'Just in Case' medication

People with dementia, as well as many other people, are sometimes prescribed 'just in case' medication packs as they approach the end of their lives. The general idea is that appropriate medications should be available to those who are caring for the person approaching the end of their life when they are needed rather than when the surgery or pharmacy may be open.

The BMA have published a very useful paper about this:

http://www.bma.org.uk/support-at-work/gp-practices/service-provision/prescribing/focus-on-anticipatory-prescribing-for-end-of-life-care

Share the Orange

This video is self-explanatory:

Alzheimer’s Is Not Normal Aging — And We Can Cure It

I thought this was worth posting. He says some interesting things but it's a bit of an anti-climax when you realise that, as with so many new ideas that are discussed, there's still a long, long way to go. The images shown from 3.05 are very powerful: