Do what works

Online, someone asked how best to help their partner who has dementia. All kinds of approaches are explained and championed. How do you decide what to do for the best?

I would say be pragmatic. Do what works for you and your partner. You have to give it a fair trial of course, no point in giving up the first time it goes wrong.

The most important thing to remember when thinking about all the issues around caring for someone with dementia is 'everybody is different' . People often pay lip-service to the truth of this statement then these same people go on to make sweeping generalisations about people with dementia. We can certainly learn from people in similar situations, but we can't just treat the person we care for exactly as some guru, authority figure or other genuine carer tells us to. Well, we can, but if we do we are setting ourselves up for failure and frustration.

If anyone out there needs dementia help

It occurs to me that it might be useful to post links to two extremely valuable sources of help and support which I may have mentioned before. These particular links will be of use to English readers only.

Admiral Nurses are mental health nurses specialising in dementia. Admiral Nurses work with family carers and people with dementia, in the community and other settings. Read more here:

http://www.dementiauk.org/what-we-do/admiral-nurses/

Towards the bottom of the page there's a link to a direct phoneline number in case you don't have Admiral Nurses based near you.

The Alzheimer's Society can also be very helpful.  This link will help you find your nearest branch:

http://alzheimers.org.uk/localinfo

Dementia fact sheets available online

The Alzheimer's Society have a collection of very helpful factsheets available
 here.

Dementia UK also have a very helpful factsheet which manages to pack in a large amount of very useful information into one document here.

What people with dementia really want

People with dementia and their family carers say (National Dementia Declaration) that they want to see the following outcomes in their lives:
I have personal choice and control or influence over decisions about me
I know that services are designed around me and my needs
I have support that helps me live my life
I have the knowledge and know-how to get what I need
I live in an enabling and supportive environment where I feel valued and understood
I have a sense of belonging and of being a valued part of family, community and civic life
I know there is research going on which delivers a better life for me now and hope for the future. 

If you really accept this, then much of what passes as advice to people who care for people with dementia is seen to be deeply flawed.

Accentuate the positives

On the journey from mild cognitive impairment and on through various stages of dementia, discussions with professionals, at which patients are very often present, tend to focus on deficits. I have been very aware of this recently after help from an occupational therapist whose aim was to see what S can still do and how her skills can be developed and extended. She concentrated on putting socks on and teeth-cleaning though some of her observations and advice could be generalised to other activities. This was helpful, not only because she was pleasantly surprised at S's ability to respond to requests despite the distraction of her auditory hallucinations, but because S was receiving encouragement and a positive response. It made me realise that we haven't met many professionals who have been as positive. It is more usual for them to ask questions which highlight deficits and then to suggest to carer and patient that this is only to be expected. There's an underlying fatalism that doesn't escape S's notice.

I have always believed that people, whatever their age and condition, respond to other people's expectations so I can understand why some people with dementia would rather not see 'doctors'.

The message I take from all this is that it does no harm, and may do a lot of good, to concentrate on what people with dementia can do rather than what they can't.

If I hear anyone else talking about 'them' and how 'they' are .......

I think I've posted about this before but as time goes by it annoys me more and more. I often browse the Alzheimer's Society Talking Points and there's plenty of useful advice there. However, I often come across posts that generalise about Alzheimer's patients and even anyone with any kind of dementia in the crudest and most extraordinarily misleading ways. I read one recently and it disturbed me that many people were commenting on it as if it were the holy grail. Of course, it contained useful advice but it wasn't just the fact that it was so patently of US origin that put me off!


One section started 'They are scared all the time'. Sorry, that's untrue. It may be true of some of 'them'.(Indeed it could well apply to some people who don't have dementia.) Some of 'them' may be scared some of the time just like almost all of the rest of us. Another example from the same piece: 'Memory loss progresses daily'. This is so patently false that I'm surprised it's allowed on an Alzheimer's Society site. You only have to read a few posts to realise that one of the things that puzzles and frustrates many carers is that it is often the case that the person they are looking after is different from one day to the next, sometimes from one minute to the next.


What is it with these people? One of the best pieces of advice I ever received was: 'When you've seen one person with dementia, you've seen one person with dementia.' Every carer is caring for a unique individual person. They probably know this person better than anyone else. It's always worthwhile listening to what other people have to say and, if it seems appropriate, taking it on board. But if you find them talking 'they' and 'them' you can be absolutely certain that they are not thinking straight and what they say needs to be considered very carefully. 

Meeting an Admiral Nurse

Admiral Nurses are dedicated to helping dementia sufferers, and particularly their carers, in the same way that Macmillan nurses work with people who have cancer. I'd been promised, by our Care Co-ordinator (from the Young Onset Service) that I would be able to have regular meetings with an Admiral Nurse. I felt this could be a great help to me as they obviously have an enormous amount of knowledge and experience and are also trained counsellors. Incidentally, this is one advantage of living in a metropolitan area  -  whole swathes of the population do not have access to Admiral Nurses. Scandalously, there are (according to the dementia UK website) only eighty five Admiral Nurses nationwide and they tend to be concentrated in a few places. However, anyone reading this who thinks they would benefit from a conversation with an Admiral Nurse can try calling 0845 257 9406 or can email: emaildirect@dementiauk.org.

I found the meeting very helpful. Some weeks ago I was aware of being so stressed that I went to the GP about it. He referred me for counselling so I also, eventually, have that as an option. But I think the AN who is a good listener and does not claim to 'know it all', who avoids generalisations and who appears to know a lot about various projects and groups in the area which might be helpful to S is going to be a great asset to me, and therefore to S -  their philosophy is to work with the carer in order to help both the carer and the person being cared for.

After the disappointments of the Young Onset Service, this could be a real boost.

Use it or lose it

Is another lesson - for all of us. Back when S was able to write, I'd get her to do a few lines on postcards for her friends and family when we were away. The last to be written showed much more regular handwriting than the first. I would point this out to S and we'd agree that she should try and do some writing regularly so that she didn't lose the ability. But whenever I tried to get her to practise, she'd either avoid it or give up fairly quickly. Now she doesn't know how to hold a pen.

Latterly I've got her to sign her name on Christmas cards. Because only about one out of three signatures were successful, I'd get her to write on labels and we'd cut the good ones out and stick them on. Again, the success rate rose as she practised. But I don't think she was able to do this last year and it wouldn't even be worth trying now - too upsetting even if she agreed.

It's the same with walking. When the weather is decent, I've managed to get her out for walks and sometimes, even recently, done five to seven miles a week. The more we do, the better, more normal, her walking usually is.

When we recently saw the Professor, we mentioned that her daughter, who probably doesn't do walks with her much further than from the car park to the shopping centre, felt that her walking was not normal. She seemed all hunched up. The Professor said that this was a result of the condition having progressed. I'm sure he's right but I also know that if only I could persuade her to walk regularly, this deterioration in her walking ability could, at the very least, be slowed down.

Today, our first partially sunny day for ages, I tried to get S out for a walk. She agreed initially, but then changed her mind, and my efforts to change her mind again were unsuccessful. She said I could go on my own, which wasn't the point and, anyway, I don't leave her alone now unless I absolutely have to, and then I would only go out for a few minutes.

Several hours later, she is still sitting in her dressing gown having lost yet another opportunity to make some impact on her condition. But she seems quite happy, whispering away and smiling to herself.

Remember - use it or lose it. Most of us have no excuse.