Dementia Campaigner Set to Help Improve Care Home Standards
Wednesday, July 29th, 2009
on behalf of Care Inspectorate
Former nurse will work with care regulators to raise awareness of devastating condition
A FORMER nurse who has been diagnosed with the early stages of dementia is to use her experience to help improve the quality of care for people with the condition in Scotland.
Agnes Houston, 60 (pictured above left), first became aware of the devastating effects of the condition after nursing her late father, who was diagnosed with both vascular dementia and Alzheimer’s, through his last years at home.
And despite being diagnosed herself three years ago with the early onset of Alzheimer’s, Agnes is to team up with Scotland’s care regulator, the Care Commission, to play a key role in raising awareness of the condition.
Agnes has been invited to join the Care Commission’s influential Involving People Group (IPG), made up of people who use care services and informal carers, which meets around four times a year to influence the scrutiny of care services and to give opinions and advice on other policies and procedures. The Care Commission is committed to using the feedback from the IPG to improve the quality of care services.
One of Agnes proposals is to encourage care homes to promote the use of ‘memory books’ which have been proven to play a significant role in improving the care for people with dementia.
Agnes’ initiative follows a joint report – Remember, I’m Still Me – by the Care Commission and the Mental Welfare Commission published in May, which highlighted a range of concerns, most notably the excessive use of drugs used to control behaviour and the lack of regular medication reviews.
The report also highlighted a lack of staff knowledge about the life history and individual needs of people in their care – only 24% of people had an adequate record of their life, a key factor in helping to treat dementia.
Agnes, who lives in Coatbridge, said she devoted herself to her campaign after becoming aware of a marked difference in the treatment given to her father at home and late mother-in-law, who also had dementia but was treated in a care home.
Agnes said: “Both my dad and mother-in-law were diagnosed with dementia. As a family we looked after my dad at home, but my mother-in-law didn’t live close by so was looked after in a care home.
“The differences in the standards of care were quite dramatic. To me the key to maintaining the lifestyle of a person with dementia is early diagnosis, being prescribed the correct medication, regular reviews of the medication being given and personalising dementia care for each individual.”
Agnes’ determination to change thinking over the treatment of dementia reached new levels when she was diagnosed with the condition – prompting her to record her own memory book and look to champion her cause with care homes.
She said: “Since being diagnosed with dementia I have started writing a memory book, which is basically a journal detailing my life history. I am also compiling a picture book with photographs to illustrate my life through the ages.
“It’s images and memories like this can really help ensure the person inside the person with dementia is never forgotten.
“I understand that it is often difficult in care homes for carers and nursing staff to get to know all residents on an individual basis, especially those with dementia.
“Staff in care homes are often lovely but very task orientated. I am hoping my work with the Care Commission will help to give a better understanding of dementia and provide greater focus on the simple measures that can be made to make big improvements to the lives of people with dementia.
“I certainly will be looking to introduce a system where people with dementia in care homes have pictures on their door to help trigger their own memory and allow nursing staff to get to know them. Each individual should also be encouraged to produce a memory book recording their history, which has shown to be a key factor in helping to treat dementia.
“The work I will be doing with the Care Commission is very important. Care homes shouldn’t be afraid of the Care Commission visiting them. It should be viewed as a positive thing enabling homes to seek help in improving the standard of care they provide.”
Agnes – a member of Alzheimer Scotland’s user/carer forum – retired from work as Practice Manager in a Chiropractor clinic in Coatbridge last year, and is now vice chairperson of the charity, Scottish Dementia Working Group (SDWG).
Amongst their activities the group regularly travels across the UK and Europe to talk with medical practitioners to help educate them as to what living with a diagnosis of dementia actually means.
They also consult with the Scottish Minister for Public Health twice a year and have produced a number of books to help dementia sufferers and their families cope with the disease.
Agnes added: “Education is paramount. The last thing you want is people to feel sorry for you. At the SWDG we have even written a joke book, with an entry from Alex Salmond.
“Through being a member of the SWDG and my experience of nursing my father through dementia I feel I can bring many helpful suggestions to care homes via the Care Commission, hopefully improving further standards in dementia care.”
The findings from Remember, I’m Still Me were based on a series of unannounced visits to 30 care homes across Scotland, between August 2008 and March 2009. Up to 67,000 people in Scotland have dementia and about 40% are in care homes or hospitals.
Sue Neilson, Operations/Development Manager (Health), said the Care Commission very much welcomes this involvement from Agnes.
She said: “We believe that good quality care will come from involving people like Agnes and we are committed to listening to what people have to say and taking action to improve their care.
“What matters most when it comes to quality of care is the experience of the people who receive it. People want to have a voice – they want to be asked what they think and whether anything should change. In fact we expect care providers to actively involve the people who use their services and make positive changes based on that feedback.
“Through her own experiences Agnes has developed a very good understanding of dementia and how the condition can impact on a person’s life and that of their family. She is willing to share that experience and we will support her in every way we can to help improve the quality of dementia care in Scotland’s care homes.
The Remember I’m still me report acknowledges that the responsibility for improving dementia care lies with a number of agencies and bodies and that a collective response is needed. We will work with care homes, the Mental Welfare Commission, Scottish Government, Local Authorities, Health Boards and others to address the shortfalls in care identified in the report.”
The Scottish Government welcomed the report, accepted its recommendations in full and has already announced its intention to develop a Dementia Strategy for Scotland by Easter 2010.This will take into account the findings of the Remember I’m still me report. A consultation on the Strategy is expected in September this year.
Scientists are now using Cell Based Assays which are experiments based on live cells to find out more on tumor and cancer. One of the main side effects of a tumor is memory loss and scientists are currently experimenting on how they can get a permanent cure for these types of diseases.
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