I was quite shocked to find that a friend's mum and dad (both in their eighties) shared the assumption that her daughters (in their thirties) were bound to develop dementia. This was based on the fact that both the friend and her mother developed dementia but ignored the fact that each of them had an entirely different kind of dementia.
I mentioned this to my step-daughter. As S's mum had vascular dementia, we had discussed it before and I had found reliable information online suggesting that the number of people who will almost certainly develop dementia as a result of their genes is fairly small. After our latest conversation she sent me a PDF document from Alzheimer's Research UK entitled 'Genes and Dementia' which I feel is pretty reassuring.
You can see the document by following this link:
http://www.alzheimersresearchuk.org/siteFiles/resources/pdf/ARUK_Genes_and_Dementia_2014.pdf
Friday, 23 May 2014
Thursday, 22 May 2014
Some people with dementia do just fade away peacefully
In this dementia awareness week, I feel it's important to try to make sure that people have a balanced view about the effects of dementia. I spend a lot of time reading heart-rending accounts of the real suffering of people with dementia and their carers and the final part of the dementia journey is often a dreadful experience for them.
Without denying their experience, I want to share a little information about my mum's journey to show that some people with dementia do remain contented in the 'end of life' stage and die peacefully.
This photo was taken just after my mum's 90th birthday:
Without denying their experience, I want to share a little information about my mum's journey to show that some people with dementia do remain contented in the 'end of life' stage and die peacefully.
This photo was taken just after my mum's 90th birthday:
She died 3 months later (AD on the death certificate). At that point she had been bed-ridden for getting on for 2 years. We saw her a few days before she died. She was still smiling. Her later years were spent in a Methodist Home for the Aged. Although they didn't normally look after people with advanced dementia, they were happy for her to see out her days in their care because she had contributed so much, always helping new residents to settle in, for example. They looked after her very well. She died peacefully.
She was, comparatively, lucky. So were we.
She was, comparatively, lucky. So were we.
Tuesday, 20 May 2014
Dementia awareness (part 2}
* Hurrying and dementia don't go together well - aural and visual impairment may complicate things
When talking to a person living with dementia, it's a good idea to talk slowly and as clearly as possible. Depending on the progress of the disease, people may first of all have difficulty hearing what you say and may then take longer than you might expect to process what they have heard.
Similarly, every day tasks will often be carried out very, very slowly. It is very easy, to become impatient. And totally counter-productive.
As well as hearing problems, people living with dementia may also experience visual impairment and/or they may, like my wife, have their eyes closed a lot of the time. I often have to suggest that S opens her eyes when climbing the stairs or getting into a car, for example. It helps! As do the same little prompts each time.
* It's not inevitable that people living with dementia will end up in a care home but it's not always possible for them to be cared for at home
Carers often appear divided about this. Some are determined to see the role through to the end, others assume that there will come a point when they will not be able to cope.
In reality, while most people living with dementia end their days in a care home or in hospital, others do stay at home.
It is foolish for anyone to express certainty about their ability to cope right through to the end as no-one can predict how the condition will progress in any individual. Sometimes carers find their own health breaks down, perhaps as a direct result of the stress the role brings, and the decision is taken out of their hands.
* Most carers continue to care for a person even after they have moved to a care home
Many carers visit very regularly and try to make sure that everything possible is being done to make the person they care for contented.
Relatives often worry that the person living with dementia will forget who they are. This is not inevitable, and the more often you visit the less likely it is.
When talking to a person living with dementia, it's a good idea to talk slowly and as clearly as possible. Depending on the progress of the disease, people may first of all have difficulty hearing what you say and may then take longer than you might expect to process what they have heard.
Similarly, every day tasks will often be carried out very, very slowly. It is very easy, to become impatient. And totally counter-productive.
As well as hearing problems, people living with dementia may also experience visual impairment and/or they may, like my wife, have their eyes closed a lot of the time. I often have to suggest that S opens her eyes when climbing the stairs or getting into a car, for example. It helps! As do the same little prompts each time.
* It's not inevitable that people living with dementia will end up in a care home but it's not always possible for them to be cared for at home
Carers often appear divided about this. Some are determined to see the role through to the end, others assume that there will come a point when they will not be able to cope.
In reality, while most people living with dementia end their days in a care home or in hospital, others do stay at home.
It is foolish for anyone to express certainty about their ability to cope right through to the end as no-one can predict how the condition will progress in any individual. Sometimes carers find their own health breaks down, perhaps as a direct result of the stress the role brings, and the decision is taken out of their hands.
* Most carers continue to care for a person even after they have moved to a care home
Many carers visit very regularly and try to make sure that everything possible is being done to make the person they care for contented.
Relatives often worry that the person living with dementia will forget who they are. This is not inevitable, and the more often you visit the less likely it is.
Monday, 19 May 2014
Dementia awareness (part 1)
As promised, here are some of the things about dementia which everyone who wants to be 'dementia aware' needs to bear in mind.
* Everybody who has dementia really is different from everyone else who has dementia.
Yes! Really. As more and more people are being given a diagnosis of 'mixed dementia' ('a little bit if this and some of that') and as more and more different types of dementia are being named it may be time to accept that there are as many kinds of dementia as there are people living with dementia.
As the wise saying has it: 'When you've seen one person with dementia, you've seen one person with dementia.'
* It's not just about memory
The public at large, and the media, appear to believe that dementia is all, or mostly, about losing your memory. It is, in part, but the difficulties involved in living with dementia go far beyond being unable to remember who the prime minister is, for example. You can live quite happily without being able to recall stuff like that. As Iris Murdoch is quoted as saying, in response to that question: 'I don't know. Does it matter?'
Of course, when someone loses the ability to write and, usually later, to read, you can call that 'forgetting' if you want to, but that doesn't do justice to the devastating loss of these abilities.
And when someone loses the ability to swallow and therefore dies, which is how most people with dementia die, to say that they have forgotten how to swallow is akin to saying that someone who dies from lung disease has forgotten how to breathe.
Worse still, for so many carers, are the personality changes which occur in most, though not all, people who have dementia. Sometimes, it is true, people change for the better, and a person who has been cantankerous all their life softens and may even become appreciative of the help they are being given. But more often, it seems, there is a change for the worse. People who have always been warm and gentle human beings can become verbally and physically aggressive towards those they previously loved and harangue or attack them night and day. Imagine that.
Even people who retain some of the qualities that made them so loveable tend to lose the ability to empathise so that when they are told bad news about someone who used to be close to them, they might make an appropriate verbal response but give no indication of being upset. I suppose they've 'forgotten how to feel'!
* A person with dementia is not a child
Though there are obvious similarities between the behaviour of someone with advanced dementia and the behaviour of an infant, it is very important to remember that the person living with dementia is not a child, but a person who has decades of experience and memories even though these may no longer be accessible in ways that we can recognise. This post contains a quote which explains why this is so important:
http://adventureswithdementia.blogspot.co.uk/2011/12/this-struck-such-chord-with-me.html
* The best way to relate to a person with dementia is to try to to relate to them as a person
Try talking to them. You may be able to have a perfectly normal conversation with them. They may take a long time to reply. They may not reply at all. You'll soon get some idea of what they are capable of. And, as you get to know them, they will probably still surprise you.
* Everybody who has dementia really is different from everyone else who has dementia.
Yes! Really. As more and more people are being given a diagnosis of 'mixed dementia' ('a little bit if this and some of that') and as more and more different types of dementia are being named it may be time to accept that there are as many kinds of dementia as there are people living with dementia.
As the wise saying has it: 'When you've seen one person with dementia, you've seen one person with dementia.'
* It's not just about memory
The public at large, and the media, appear to believe that dementia is all, or mostly, about losing your memory. It is, in part, but the difficulties involved in living with dementia go far beyond being unable to remember who the prime minister is, for example. You can live quite happily without being able to recall stuff like that. As Iris Murdoch is quoted as saying, in response to that question: 'I don't know. Does it matter?'
Of course, when someone loses the ability to write and, usually later, to read, you can call that 'forgetting' if you want to, but that doesn't do justice to the devastating loss of these abilities.
And when someone loses the ability to swallow and therefore dies, which is how most people with dementia die, to say that they have forgotten how to swallow is akin to saying that someone who dies from lung disease has forgotten how to breathe.
Worse still, for so many carers, are the personality changes which occur in most, though not all, people who have dementia. Sometimes, it is true, people change for the better, and a person who has been cantankerous all their life softens and may even become appreciative of the help they are being given. But more often, it seems, there is a change for the worse. People who have always been warm and gentle human beings can become verbally and physically aggressive towards those they previously loved and harangue or attack them night and day. Imagine that.
Even people who retain some of the qualities that made them so loveable tend to lose the ability to empathise so that when they are told bad news about someone who used to be close to them, they might make an appropriate verbal response but give no indication of being upset. I suppose they've 'forgotten how to feel'!
* A person with dementia is not a child
Though there are obvious similarities between the behaviour of someone with advanced dementia and the behaviour of an infant, it is very important to remember that the person living with dementia is not a child, but a person who has decades of experience and memories even though these may no longer be accessible in ways that we can recognise. This post contains a quote which explains why this is so important:
http://adventureswithdementia.blogspot.co.uk/2011/12/this-struck-such-chord-with-me.html
* The best way to relate to a person with dementia is to try to to relate to them as a person
Try talking to them. You may be able to have a perfectly normal conversation with them. They may take a long time to reply. They may not reply at all. You'll soon get some idea of what they are capable of. And, as you get to know them, they will probably still surprise you.
Wednesday, 14 May 2014
Dementia Awareness Week
Dementia Awareness week in England runs from 18th to the 24th May. This link to the Alzheimer's Society website gives more information:
http://www.alzheimers.org.uk/remembertheperson
In each area there will be different activities and events taking place. Anything that raises awareness about dementia must be a good thing.
Even since we started on our dementia journey I have found that more and more people have some understanding of the disease.
In my next post I'm going to try to identify things that I think people need to know and understand about dementia.
http://www.alzheimers.org.uk/remembertheperson
In each area there will be different activities and events taking place. Anything that raises awareness about dementia must be a good thing.
Even since we started on our dementia journey I have found that more and more people have some understanding of the disease.
In my next post I'm going to try to identify things that I think people need to know and understand about dementia.
Monday, 5 May 2014
An invitation from a TV documentary company
Twofour Broadcast, the production company behind Educating Yorkshire (www.twofour.co.uk/broadcast ) are making a three-part documentary series for Channel 4 all about dementia. The series aims to document the lives of people with dementia and their families whilst raising awareness about the latest progressive techniques being used to help those living with the disease. We want the series to send out a positive message about dementia, and to show that there are ways to cope and live better with the illness for the sufferer and the carer.
Each episode will look at a number of families who are caring for a relative with dementia at home who have reached a certain crisis point and are starting to access outside help, or/and consider other techniques that can help their situation . The idea is to follow a family through this difficult process whilst they meet different groups and organisations, who are using the latest and most up-to-date progressive techniques in dementia care and therapies.
We hope to show that the work they do will help give the carer a better understanding of their relative’s particular type of dementia and empower them to take steps to care for and communicate with their relative in a new way. Within the programme, would like to illustrate the life the relative has led and aim to work together with the family to find out about their past through life story work, music therapy and reminiscence work. In some cases, by bringing particular care approaches into their lives, we hope to witness the person with dementia re-engage with an interest or activity they may have enjoyed in the past.
We are looking for families who make like to share their stories and take part in the series. We sincerely understand how sensitive the area of dementia is but we hope the series will send an important message out generally, and help eliminate some of the stigma associated with the illness.
I have been contacted by : Ceri.Hubbard@twofour.co.uk.
She has explained to me the kind of programmes they are aiming to produce and sent me the above summary. If anyone is interested in talking to her and/or taking part in the programmes, she would welcome a discussion.
As a retired education professional, I was very impressed when she told me that this is the company behind Educating Essex and Educating Yorkshire, two of the best and most thoughtful programmes about schools that have ever been produced. I know, from hearing interviews with the participants, that great care is taken to ensure that everyone involved is happy with the finished product.