Did you know that the Alzheimer's Society is always looking for people who would like to volunteer? The Society offers a great range of support to sufferers and their carers and could not do so without the dedication of large numbers of volunteers. The kind of things they contribute varies greatly. Help is needed with fund raising, administration, maintaining information sites and libraries, providing transport and organising social events. Befriending someone with dementia, giving 2 or 3 hours a week to be with them, can mean that they can can continue a hobby or interest and that their carer can also have a break to do something that allows them to get out and find refreshment. Volunteers say it's fun and there's something for everyone no matter what your gifts. There is a proper induction programme, on-going training, one-to-one or group-based support and expenses are re-imbursed.
There are around 4,800 people with dementia of one kind or another in the Ripon, Harrogate and Craven areas alone, two thirds of whom live in the community. By 2025 there will be over 1 million people with the disease in Britain and is is essential that adequate support and expertise in caring is built up over the next few years.
If you think you might be able to help, please contact
The Volunteering officer, Alzheimer's Society, Low Mill Units, Phoenix Business Park, Ripon HG4 1NSP 01765 690900 ripon@alzheimer's.org.uk
The national Alzheimers Society website also has a wealth of really useful information. If you go to the bottom of the home page and enter your postcode, you can find an excellent list of all the services in the Richmond and Hambleton and the Ripon and Harrogate areas.
Showing posts with label dementia. Show all posts
Showing posts with label dementia. Show all posts
Saturday, 30 June 2012
Sunday, 29 April 2012
Nerves, Muscles and Laughter
I recently came across some very simple but helpful guidelines for talking to peole suffering from dementia. Ten things that, if put into practice, really help. A person with dementia is experienceing loss of memory, mood swings, anxiety and problems with communication and reasoning.
As with all communication, probably eight tenths of what we communicate is through body language and tone. To remember this makes understanding the words that are being said less important and both you and the person you are talking to will relax. I had a friend who was training as a doctor and whose grandmother had fairly advanced dementia; she used to sit with her grandmother learning lists of nerves and muscles out loud, but in a tone as though she was reading a story. She was able to spend pleasant half hours with her grandmother when they would laugh alot and take pleasure in each other's company and get her revision done. Her grandmother was helping her and at some level she seemed to know this. It is important that people know they are valued; a sense of not being valued by anyone may make dementia a lonely place to inhabit.
- Remember that mood and atmoshpere are very important; how you say things and your tone of voice is more important than what you say.
- Listen, have chats, laugh, give them your full attention.
- Try to find things you can do together, breaking activities down into small steps.
- Be reassuring.
- Avoid scolding, contradicting or correcting.
- Look behind the person's words for their meaning - how are they feeling?
- Show affection in ways that are acceptable to the person.
- Be flexible and tolerant.
- Allow a person time to get to know you - meeting new or unfamiliar people is particularly difficult.
- Never talk over the person - include them all that you say and do.
As with all communication, probably eight tenths of what we communicate is through body language and tone. To remember this makes understanding the words that are being said less important and both you and the person you are talking to will relax. I had a friend who was training as a doctor and whose grandmother had fairly advanced dementia; she used to sit with her grandmother learning lists of nerves and muscles out loud, but in a tone as though she was reading a story. She was able to spend pleasant half hours with her grandmother when they would laugh alot and take pleasure in each other's company and get her revision done. Her grandmother was helping her and at some level she seemed to know this. It is important that people know they are valued; a sense of not being valued by anyone may make dementia a lonely place to inhabit.
Tuesday, 28 December 2010
Two Good Reads
This year, the sheer luxury of relaxation offered by those glorious after Christmas days has been emphasised by snow and fog. Apart from venturing out to the odd service or party, to collect logs from the garage and to wander along the Ripon canal at twilight in the still crisp snow, the best thing to do has undoubtedly been to stay in and read infront of the fire. For the first time since coming to Yorkshire, we didn't even make the St Stephen's day pilgrimage to Fountains Abbey due to 'flu and chest infections in the family.
So I have finished two really good reads in the last three days. Infact, I think one of them was quite the most remarkable novel I have read in a long time. Lisa Genova's Still Alice is the story of a Havard professor of cognitive psychology and linguistics who discovers she has early onset Alzheimer's Disease, aged fifty. The novel is a quite brilliant evocation of the slow progress into forgetfulness and disorientation which detatches her from her career (which is at its height), her support networks, her family and even heself. Yet it is not unremittingly depressing. As well as giving the reader some insight into the fear and the increasing sense of confusion felt by those who suffer from dementia, it shows how relationships can continue to change and even to blossom through the early stages of the disease. Alice, the central character, finds that she can increasingly communicate most profoundly with the daughter she has never before got on with. The reason they have continually argued is that Alice is an academic who is intellectually ambitious for her daughter while Lydia, the daughter, wants more than anything to be an actor and is impatient with the notion of studying, theoretically, what she can do in practice. As Alice's grasp on complexity diminishes and her ability to read begins to desert her, she and her daughter find that they can communicate through talking about how character and emotion are developed in the plays her daughter is in. A long time ago, a geriatrician I knew whose mother had dementia advised me that mood was they key to communication with dementia sufferers. The content of conversations becomes less and less important while picking up on mood and atmosphere and either joining in or purposefully changing them becomes the key to conversation. Alice becomes expert at picking up the atmosphere of an exchange and uses this ability to encourage Lydia as she studies her parts.
The book is choc full of tiny insights into the impact of Alzheimers on both the sufferer and their family but it is written unapologetically entirely from the view point of the person living with the disease. There is humour and hope and a sense that life changes but remains precious as the disease progresses. Probably one of the most chilling aspects of the book is the way it depicts how dementia sufferers become invisible and voiceless. From the colleagues who ingnore her and become embarrassed in her presence early on, to the doctors and family members who discuss her in her hearing later on, and the social worker who is funded to run a support group for care-givers but not for the sufferers themselves, the reader catches a glimpse of what it is like to begin to disappear. Alice manages to capitalize on the transition period where she has the disease but retains some insight and comunication skills in order to deliver a speech at a conference on Dementia showing what the disease is like for the sufferer. I suspect that few sufferers who had not been former university professors would have the support structures to make this kind of thing possible. The poignancy of her achievement in doing this is that she will only remember the contribution she has made and the feeling of restored confidence it has given her for the duration of the day on which it happened.
The second excellent read I have enjoyed is Juliet Barker's The Brontes which is a biography of the whole family. Barker's thesis is that the individual Brontes can only be understood when studied in the context of the whole family unit and she has used previously untapped sources to provide a more rounded and (in Mr Bronte and Branwell's cases, a more sympathetic) protrait of family members than the usual hagiography of Charlotte, Emily and Anne at the expense of others in their tight knit circle. She also gives some very interesting insights into the vicinity of Haworth and Bradford in the early to mid nineteenth century and the life and work of a conscientious parish priest in the north of England. Patrick Bronte was extremely faithful in his care of his parishioners throughout his own repeated bereavements and personal worries and it is interesting to read the unexpectedly liberal and far sighted views he held on many social issues. He remained, to the end of his life, a true evangelical yet he accommodated the various theological and spiritual outlooks of his own family with realism and compassion. I had not previously grasped the extent to which Emily lived almost entirely in her own world without demonstrating much empathy for those around her. Home bird she might have been, but this was more about home giving her the space to be independently and unashamedly herself than about concern or sympathy for the others. Charlotte did her (and us) a dreadful disservice in destroying her second novel or the parts of it she left. Charlotte could be amazingly negative and critical of those around her and one wonders whether she over estimated the degree to which Emily's work would have added to mid Victorian prudishness and distaste over the Bronte legacy. Well worth a read, whether you are familiar with the Brontes or not.
Still Alice Lisa Genova, Simon and Schuster UK Ltd 2009
The Brontes Juliet Barker, Abacus 2010 (first published in the UK by Weidenfield & Nicholson 2004)
Both on Amazon
So I have finished two really good reads in the last three days. Infact, I think one of them was quite the most remarkable novel I have read in a long time. Lisa Genova's Still Alice is the story of a Havard professor of cognitive psychology and linguistics who discovers she has early onset Alzheimer's Disease, aged fifty. The novel is a quite brilliant evocation of the slow progress into forgetfulness and disorientation which detatches her from her career (which is at its height), her support networks, her family and even heself. Yet it is not unremittingly depressing. As well as giving the reader some insight into the fear and the increasing sense of confusion felt by those who suffer from dementia, it shows how relationships can continue to change and even to blossom through the early stages of the disease. Alice, the central character, finds that she can increasingly communicate most profoundly with the daughter she has never before got on with. The reason they have continually argued is that Alice is an academic who is intellectually ambitious for her daughter while Lydia, the daughter, wants more than anything to be an actor and is impatient with the notion of studying, theoretically, what she can do in practice. As Alice's grasp on complexity diminishes and her ability to read begins to desert her, she and her daughter find that they can communicate through talking about how character and emotion are developed in the plays her daughter is in. A long time ago, a geriatrician I knew whose mother had dementia advised me that mood was they key to communication with dementia sufferers. The content of conversations becomes less and less important while picking up on mood and atmosphere and either joining in or purposefully changing them becomes the key to conversation. Alice becomes expert at picking up the atmosphere of an exchange and uses this ability to encourage Lydia as she studies her parts.
The book is choc full of tiny insights into the impact of Alzheimers on both the sufferer and their family but it is written unapologetically entirely from the view point of the person living with the disease. There is humour and hope and a sense that life changes but remains precious as the disease progresses. Probably one of the most chilling aspects of the book is the way it depicts how dementia sufferers become invisible and voiceless. From the colleagues who ingnore her and become embarrassed in her presence early on, to the doctors and family members who discuss her in her hearing later on, and the social worker who is funded to run a support group for care-givers but not for the sufferers themselves, the reader catches a glimpse of what it is like to begin to disappear. Alice manages to capitalize on the transition period where she has the disease but retains some insight and comunication skills in order to deliver a speech at a conference on Dementia showing what the disease is like for the sufferer. I suspect that few sufferers who had not been former university professors would have the support structures to make this kind of thing possible. The poignancy of her achievement in doing this is that she will only remember the contribution she has made and the feeling of restored confidence it has given her for the duration of the day on which it happened.
The second excellent read I have enjoyed is Juliet Barker's The Brontes which is a biography of the whole family. Barker's thesis is that the individual Brontes can only be understood when studied in the context of the whole family unit and she has used previously untapped sources to provide a more rounded and (in Mr Bronte and Branwell's cases, a more sympathetic) protrait of family members than the usual hagiography of Charlotte, Emily and Anne at the expense of others in their tight knit circle. She also gives some very interesting insights into the vicinity of Haworth and Bradford in the early to mid nineteenth century and the life and work of a conscientious parish priest in the north of England. Patrick Bronte was extremely faithful in his care of his parishioners throughout his own repeated bereavements and personal worries and it is interesting to read the unexpectedly liberal and far sighted views he held on many social issues. He remained, to the end of his life, a true evangelical yet he accommodated the various theological and spiritual outlooks of his own family with realism and compassion. I had not previously grasped the extent to which Emily lived almost entirely in her own world without demonstrating much empathy for those around her. Home bird she might have been, but this was more about home giving her the space to be independently and unashamedly herself than about concern or sympathy for the others. Charlotte did her (and us) a dreadful disservice in destroying her second novel or the parts of it she left. Charlotte could be amazingly negative and critical of those around her and one wonders whether she over estimated the degree to which Emily's work would have added to mid Victorian prudishness and distaste over the Bronte legacy. Well worth a read, whether you are familiar with the Brontes or not.
 |
| The Churchyard at Haworth |
Still Alice Lisa Genova, Simon and Schuster UK Ltd 2009
The Brontes Juliet Barker, Abacus 2010 (first published in the UK by Weidenfield & Nicholson 2004)
Both on Amazon
Sunday, 5 December 2010
Dementia Care; Time is the Greatest Gift
I recently came across the Acorn Charity, a group in the Ripon and Harrogate area who raise money to help people with dementia and scleroderma and their carers. http://www.acorncharity.org.uk/
You may remember that about three years ago there was an ITV documentary, Love's Farewell which showed Malcolm Pointon, a dementia sufferer and his wife, Barbara, as they moved through Malcolm's illness to his death. I had seen the hubub in the media about the rights and wrongs of showing someone close to death on TV but, somehow, I had not registed the names of the people involved. I started to watch the documentary not realising that it would turn out to be about the tutors who taught me when I studied music at Homerton College, Cambridge in the 1970's. Both Malcolm and Barbara, gifted musicians and broadcasters, were on the staff of the music department there. I well remember Malcolm's honest and helpful advice about my attempts at composition for the piano. So I was deeply moved to hear him still making music at the piano despite a considerable degree of dementia. Watching this program and then various visits I have made to groups who provide day care for people with Alzheimers and other forms of dementia in this area sparked my interest in the provision of care for sufferers. Much of the standard care that is available does not suit the needs of people with dementia very well. Their great needs are for time (not being rushed) and for continuity (it's more difficult for someone with dementia to cope with making new relationships). We all know that the pressures on services that provide care mean that these two things can be almost impossible to achieve.
Acorn has been supporting the Alzheimer's Society which is based at Phoenix Park in Ripon. From that office, the Society covers Ripon, Harrogate and Craven. Besides running a 9-4 Monday - Friday Helpline, the Alzheimer's Society support befriending servies, lunch clubs and cafes, holidays for sufferers and carers and home visits by dementia support workers who have some specialist knowledge and skills. In a little on-line presentation Why Skillful Care Matters, Barbara Pointon describes the things that make a difference. The right kind of care can mean that someone is able to stay in their own home and relatives are able to continue life's journey with their loved one without becoming completely overwhelmed by the demands of caring.
www.lwdp.org.uk/05_barbara_pointon_presentation_why_skillful_caring_matters.pdf
Barbara and Malcolm's bravery in sharing their story has produced greater national awareness of the plight of people with dementia. People like Acorn and the Alzheimer's Society co-ordinate efforts locally and help to get care to the people who need it. This is an area of health care that is going to become as big a concern as the fight against cancer in future years. It is part of the story of growing older, a story that must be told and given its place in our thinking about priorities for how and where we deliver care and what research is funded. The course of the disease is slow and doesn't attract the sustained sympathy or interest that some conditions do; the fact that caring for someone with dementia requires a different set of prioirites and communication skills from those normally used and valued in social settings makes carers isolated. 60,000 deaths a year, in the UK, are attributable to dementia and the incidence of the various forms of dementia is rising. Many families are caring for someone affected by it.
You may remember that about three years ago there was an ITV documentary, Love's Farewell which showed Malcolm Pointon, a dementia sufferer and his wife, Barbara, as they moved through Malcolm's illness to his death. I had seen the hubub in the media about the rights and wrongs of showing someone close to death on TV but, somehow, I had not registed the names of the people involved. I started to watch the documentary not realising that it would turn out to be about the tutors who taught me when I studied music at Homerton College, Cambridge in the 1970's. Both Malcolm and Barbara, gifted musicians and broadcasters, were on the staff of the music department there. I well remember Malcolm's honest and helpful advice about my attempts at composition for the piano. So I was deeply moved to hear him still making music at the piano despite a considerable degree of dementia. Watching this program and then various visits I have made to groups who provide day care for people with Alzheimers and other forms of dementia in this area sparked my interest in the provision of care for sufferers. Much of the standard care that is available does not suit the needs of people with dementia very well. Their great needs are for time (not being rushed) and for continuity (it's more difficult for someone with dementia to cope with making new relationships). We all know that the pressures on services that provide care mean that these two things can be almost impossible to achieve.
Acorn has been supporting the Alzheimer's Society which is based at Phoenix Park in Ripon. From that office, the Society covers Ripon, Harrogate and Craven. Besides running a 9-4 Monday - Friday Helpline, the Alzheimer's Society support befriending servies, lunch clubs and cafes, holidays for sufferers and carers and home visits by dementia support workers who have some specialist knowledge and skills. In a little on-line presentation Why Skillful Care Matters, Barbara Pointon describes the things that make a difference. The right kind of care can mean that someone is able to stay in their own home and relatives are able to continue life's journey with their loved one without becoming completely overwhelmed by the demands of caring.
www.lwdp.org.uk/05_barbara_pointon_presentation_why_skillful_caring_matters.pdf
Barbara and Malcolm's bravery in sharing their story has produced greater national awareness of the plight of people with dementia. People like Acorn and the Alzheimer's Society co-ordinate efforts locally and help to get care to the people who need it. This is an area of health care that is going to become as big a concern as the fight against cancer in future years. It is part of the story of growing older, a story that must be told and given its place in our thinking about priorities for how and where we deliver care and what research is funded. The course of the disease is slow and doesn't attract the sustained sympathy or interest that some conditions do; the fact that caring for someone with dementia requires a different set of prioirites and communication skills from those normally used and valued in social settings makes carers isolated. 60,000 deaths a year, in the UK, are attributable to dementia and the incidence of the various forms of dementia is rising. Many families are caring for someone affected by it.
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