// Dementia and Altzheimers - My Story
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Daily Telegraph 14th.July and 30th.July Daily Telegraph 4th.August and 10th September Some books dealing with dementia Daily Telegraph 25th May and ?  Daily Mail 27tht.January  Daily Mail 14th March 2017  Daily Mail 24th January 2017 Daily Mail 31st.October and Daily Telegraph 14th.June Daily Mail 18th.July 2015 The care Act 2014  Daily Mail 7th October  Daily Mail 23rd February 2017  Daily Mail 11th march 2017 Daily Telegraph 25th and 29th November Daily Telegraph 4th.November 2014  and Daily Telegraph 27th October 2014 Daily Mail 1st.October 2014 2014  and Daily Mail 27th October 2014 Daily Mail 28th.October 2014 2014  and Daily Mail 14th.March 2014 theagenda.tvo.org Daily Mail 21st.February 2015 and Daily Mail 16th.February 2015 Daily Mail 25th.February 2015 and Daily Mail 17th.February 2015 2015 General Election Daily Mail 11th.march 2015 and Daily Mail 112th.March 2015 Daily Mail 13th.March 2015 Daily Mail 22nd.April 2015 and Daily Mail 18th.April 2015 Daily Mail 14th.April 2015 and Daily Mail 23rdApril 2015 Daily Mail 22nd February 2017 Daily Mail 21st February 2017

How It Was

This website is an account of what happened to my mother after she was diagnosed with dementia. It is her story and it underlines what an awful thing Alzheimer's Dementia is, how it is treated in society and the sheer difficulties it poses for the patient as well as for relatives and friends. If you are a carer for someone diagnosed with dementia and it turns into Alzheimer's and you have not seen this condition before then you are in for a shock. This is what happened in my case. After the diagnosis, my wife and I started on a journey but we didn't have much idea where we were going. we relied on others, support workers, carers and NHS 'professionals' etc to guide us. We were introduced to a world we didn't really understand, full of buzz words and common phrases to those in the health care business but not to us. Anyway, I hope we did the best for my mother, we tried, but always at the back of your mind, knowing that we 'could have done better'. Many years beforehand, when I changed jobs and we moved house, we suggested my mother should sell up and come and live with us.....she did not accept the offer.....if she had have done, the outcome for her would have been so different.

Overview

My mother was 81 years of age when first diagnosed with dementia. in 1996. In the previous year it was clear she was developing 'a memory problem'. Through her GP, we were fortunate to get support for her through the Age Concern Confused Elderly Support Service (ACCESS) in Ipswich. My wife and I lived 150 miles away so daily visits were impossible but by arranging carer visits, meals on wheels and ACCESS support, she somehow managed in her own home for 2 years. However, in May 1998, she went 'walkabout', got lost and confused and ended up in Heath Road hospital, Ipswich. She was there for 4 months, then transferred to Hartismere hospital in Eye. After a month, she was accepted at a Residential home in Ipswich where she remained until her death in 2002. All these events are covered in detail via the menu above. Subsequent to her death, I made a claim for retrospective continuing heath care funding. This then led me through a bureaucratic minefield with the Strategic Health Authority, an Independent Review Panel and finally the Health Service Ombudsman. See the menu above for FULL detail of this CHC process which, in reality, turned out to be a complete waste of time.

The Disease

Alzheimer's Dementia is an illness, there is no disputing that, it is a modern day plague and the numbers are huge. In the UK alone we are rapidly approaching one million and yet there is no cure. The word Dementia comes from the latin word 'de' meaning 'apart' and 'mentis' meaning 'mind'. Dementia is not a disease as such, it is an overall  term describing a wide range of symptoms associated with memory loss and thinking skills and all that it subsequently entails. It is probably one of the worst things that can happen to a person, if you loose your memory, you forget how to do simple tasks, you forget how to look after yourself, you become incontinent and totally dependent on others. Eventually you forget how to eat as all your basic life functions shut down. So the question is, where is the care and where is the cure. As far as the NHS is concerned, looking after an Alzheimer's sufferer is generally classed as a social care requirement so you pay. As regards a cure, I will summarise current research in a later section but Alzheimer's is hardly a vote winner as the people who suffer with the disease by definition don't vote. So the Government is not going to stump up large amount of cash as they did for HIV, AIDS or currently the EBOLA hysteria. The NHS will deal with self inflicted conditions such as AIDS, obesity, drink related problems, drug taking issues etc but not Alzheimer's despite the fact it is a terminal illness.

Advice

Having had experience of dementia, if I was put in that position again I would not make the same mistakes. If you have a loved one with dementia, it is far better to care for them in a familiar setting as long as you can, in that way you retain more of the 'person' for longer. However, being a carer for anyone with dementia is very hard work but it can be rewarding as long as you are well aware of what dementia is and how to cope with it. Books on the Nature/Clinical Stages page (and above) are a good start and of course there is much more help available from Alzheimer's organisations now which did not exist in 1998. From my own experience I would avoid doctors and hospitals as long as practically possible, the NHS for the most part just doesn't know how to deal with Alzheimer's effectively and for that matter doesn't have universal facilities anymore. Of course at some stage a diagnosis will be necessary so try to see a doctor trained in psychiatry of old age. Aricept can be a useful medication to help stabilize the condition but there are also memory enhancers (nootropics) available over the counter. Avoid anti-psychotics and anticholinergics at all costs for dementia. At some point however, domestic facilities will probably not be adequate enough to cater for the later stages of Alzheimers so there is generally little choice but to move to a Care Home. Choose wisely and do the research.

A few pages of this website are under construction and are not available at present but if you wish to contact us, please use the CONTACT FORM

 

 

•  This website mainly relates to the period up to 2002. Subsequent to this period, 'different' continuing care funding rules apply.

•  This mainly deals with dementia of the Alzheimer's type. Other types of dementia are not considered in detail

•  The majority of the website is concerned with the 'process'. We had little idea in 2000 of how to deal with the 'person' and for that matter, the care system wasn't very forthcoming with help either.

Dementia Facts

•  In America, someone develops Alzheimer's every 67 seconds; by 2050 it will be every 33 seconds.

•  It is estimated that there are 35 million dementia sufferes across the globe. That is why tthe term 'dementia time-bomb' is used

•  Globally, the number of people with dementia is expected to double every 20 years, reaching 66 million in 2030

•  In the UK, 1 in 14 citizens over 65 will have some form of dementia and 1 in 6 over the age of 80.

•  For a woman in her 60's, the lifetime risk of developing Alzheimer's is 1 in 6. For breast cancer it is 1 in 11.

•  For Americans over 65 years of age, 1 in 9 has Alzheimer's. Over 85 years of age, the risk is 1 in 3.

•  About 20% of those diagnosed with Alzheimer's are miss-diagnosed and don't actually have the disease.

•  The risk of developing dementia increases as people grow older, hence the term 'senile dementia.

•  Mid-life Obesity increases the risk of Alzheimer's by 59%.

•  Diabetes increases the risk of Alzheimer's by 54%.

•  Those who smoke 2 packs of cigarettes a day have a 15% greater risk of Alzheimer's and a 170% increased risk of Vascular Dementia.

•  Only 2% of medical research funding is allocated to Alzheimer's; £11 per patient per year is allocated to Alzheimer's research funding compared to £289 per patient per year for cancer

•  Two thirds of people with dementia live in the community; only one third live in care homes; 64% of people living in care homes have dementia.

•  Every 71 seconds someone in the UK develops dementia.

•  There are 5 million people with dementia in Europe

•  It has been calculated that the cost of Dementia in the UK in 2014 hit £26 billion a year through health and social care costs but people with the condition, and their families, are shouldering two thirds of the cost, around £17.4 billion annually.

•  It was predicted that in 2015, there were 850,000 Alzheimer's sufferers in the UK

•  There is a grossly unfair 'artificial divide' between health and social care which unfairly disadvantages people with dementia

•  Between 1983 and 1993, the HNS removed 17,000 long stay continuous care beds from hospitals and between 1988 and 2001 the loss was 50,600 beds