Title:     Alzheimer’s Dementia Care
Brains for Research and The Dementia Tax

Date:     2012

By:         Bill Wilson

60th Wedding Anniversary, June 2011

Bill & Ada: 60th Wedding Anniversary, June 2011

I am Bill Wilson 85, Ada is 84 we have been married for 61 years and have lived in Rhyl for 27 years, our 2 daughters and families live near us.

DEMENTIA AWARE The following was my caring for Ada over 6 years. Ada is now in a marvellous EMI care home. The events that happened to Ada may not happen to the person you are caring for. Ada had a heart attack 11 years ago. First referral 2nd June 2004 for Ada to see Dr Devakumar at Glantraeth day clinic but Ada would not complete the various tests.

On 9th June 2005 Ada was confirmed as having Dementia and put on medication. I was on the verge of on emotional breakdown but took advice, saw my doctor he gave me medication which gave me the strength to become a full time Carer.
Ada got full attendance allowance from 4th July 2005.

In September 2005 Ada went out by herself at 10pm but was found safe, from then on I always locked the door.
In 2006 Ada was unable to get out of the bath, so I had a shower fitted; I did Ada’s personal hygiene and later bought incontinence pads etc. In June I got 2 hours cleaning per week free, carer’s rights. Throughout the caring period the occupational Therapist had all kinds of equipment fitted free to help Ada and myself.

November 2006 Ada started day care at Hafan Deg Day Centre for 5 hours on a Thursday, for which I paid £25.00 per week. Julie our daughter and I took Ada swimming once a week, we also went on other outings. A carer from Cornerstone took Ada for a drive and another carer from Crossroads sat and read to Ada both for 2 hours. Ada went to Glantraeth Day Clinic Saturday club for 4 hours, once a month and was constantly monitored there.

The following happened to Ada over 6 years.

Mood changes sad, crying, frightened, angry, hallucinations seeing people sitting in our lounge, did not know me at times, I was accused of infidelity, unable to put words into sentences dependant on other people.
March 2007 Ada had financial assessment and all services were free. September a carer from Q.C. Special Care came in at 7:30 am for 1 hour to help and get Ada out of bed, shower and to apply all creams, dress Ada in the clothes that I had put ready and bring Ada in for breakfast that I had prepared. October Ada was transferred from Hafan Deg Day Centre to Glen Devon EMI care home for 2 days a week day care, later this was increased to 3 days.

January 2008 I joined Alzheimer’s Society and we went to meetings once a mouth at Glan Traeth Day clinic.
Ada often tried to sit down before seat when being assisted to sitting down on a chair or toilet, there for became heavy weight and hard to control. November I had our bathroom turned into a wet room for Ada’s safety, at a cost of £1752.00

February 2009 I went into hospital for an appendix operation for 8 days then spent 4 weeks at home convalescing. Ada went into Glen Devon EMI care home for 5 weeks. March Social Services increased the morning care to 7 days a week and provided 2 weeks temporary evening care to help Ada get ready for bed. April Ada was referred to incontinence nurse and started to receive free pads.

Throughout the 6 years Ada and I received fantastic support from our family. Julie became a carer to her mum.
July 2010 I went on respite leave to Anglesey with our daughter Angela and family for 8 days, Ada stayed in Glen Devon EMI care home. When I came back I realized it was too much for me, so arranged for Ada to stay in Glen Devon EMI Care Home permanently.

As soon as I made that decision I felt a weight had been lifted of me and it was in Ada’s best interest and safety. It’s a lovely EMI care home. We are all welcome any time day or night. I go in most days for tea (5pm meal) and Sunday lunch with Ada.

I am passionate about Dementia Research so I have signed up to donate Ada and my brains for research, It’s a wonderful feeling that we will be giving something back to society and our Dedicated Research Teams, to help them Reduce the Risk, Lessen the Effects or find a cure for Dementia. Which I know they will do with the financial help from the government and the generosity of our British people. The next paragraphs I have taken from the Alzheimer’s factsheet 410.

BRAIN TISSUE DONATIONS
Many people with dementia and their relatives are interested in the possibility of donating their brain for dementia research after their death. The factsheet look at why scientists need brain tissue and what you need to consider before donating your brain.

WHY DONATE BRAIN TISSUE?
The human brain is complex and difficult to study in living people. It is also too complicated to replicate in the laboratory. Therefore, much research into Alzheimer’s disease and other dementias relies on examination of brain tissue that has been donated after the person has died. This research allows scientists to investigate the basic underlying causes of dementia and, if possible, to discover how they relate to the symptoms experienced by the person during life.

This work is also essential for observing the effects of currently available treatments for dementia. Better understanding is the first step towards better treatments.

Many people with dementia and their relatives are interested in the possibility of brain donation for research after their death. Scientists are very grateful for the generosity of the families concerned, especially as this process has to be carried out very soon after the persons death.

To ensure this research is thorough, it is also extremely important to have access to brain tissue from people who do not have dementia. This is known as control tissue, and is in even shorter supply than tissue from people with dementia. It is crucial that scientists have control tissue so that they can compare it directly with tissue from a person with dementia. These valuable donations are essential for developing new and better treatments for people with dementia and in the search for a cure.

BRAINS FOR DEMENTIA RESEARCH (BDR)
There is currently a severe shortage of brain tissue available for dementia research. In recognition of this, Alzheimer’s Society and Alzheimer’s Research UK have jointly funded an initiative called Brains for Dementia Research (BDR).

BDR is a network of brain bank facilities across England and Wales that aims to provide a simple, nationwide system for brain donation. The initiative hopes to enable more people to get involved in brain donation, which will, in turn boost the number of brains available for this important research.

Older people with or without a diagnosis of dementia can register with BDR. Participants are then monitored for memory, cognition and behaviour throughout their lives. This close personal involvement enables researchers to not only compare changes between dementia and ‘control’ brains, but to look for specific brain changes in relation to particular symptoms of dementia.

The Ada Wilson Tribute Fund
The Alzheimer’s Society has set up the first Living Tribute Fund, with donations to the Alzheimer’s Society – by naming Ada Wilson Tribute Fund – it goes straight into Dementia Research.

The next paragraphs I have taken from Alzheimer’s Society Public Policy Report
The Dementia Tax 2011
• Do British people aspire to live in a nation where it is possible to grow old well?
• Is Britain a place where the human rights of older people and all those who face disability are recognised?
• Do British politicians have the will to understand and respond ambitiously to the care needs of an ageing population?

It appears that all successive British Governments over a long period of time have singled out a group of people going into E.M.I Care Homes who have very serious illness, Alzheimer’s, Dementia, Parkinson’s, Strokes and all types of Mental illness, have to pay towards their illness and pay for all their care if their love one dies before them, i.e. they take all their inheritance down to £24.000, everyone else can leave up to £325.000 free of inheritance tax.

The Welsh Government published a white paper with a very good proposal funding care in Wales paid through inheritance tax, but not before 2015. Andrew Dilnot Head of The Commission into funding the care of elderly and disabled people 4th July 2011 went some way towards the problem, but not far enough and definitely not soon enough.

We must start now by paying into a insurance policy run by the Government, not by private company’s or Banks that can go broke. No one should be exempt. I.E people on benefit should have a small deduction taken out, low paid a small amount, all other people including self-employed should pay on a sliding scale according to their salary and bonuses, add this to inheritance tax and interest paid by the Government to pay good pensions and care for everyone.

Like the 1948 legislation promised looking after people from the cradle to the grave, NHS free at a point of need, and then our future generations will be proud of us.

We are not in the dark old days when people where sent into mental institutions. We must undo the injustice of all previous Governments.

We now have a Coalition Government and with the consensus of all other parties, I am confident they will act now 2012 to stop our most vulnerable people who cannot speak for themselves losing their life savings or home to pay for their illness.

All carers must be given much more support to keep people in their homes for as long as possible, they save the U.K millions of pounds. The Alzheimer’s research must get much more funding to find better drugs to reduce the risk, lessen the effects or find a cure for dementia. We keep on talking about our seriously ill people only needing care.

Everyone that goes into hospital needs care, and our people in E.M.I care homes need constant supervision and care.
Doctors and District Nurses go in to attend to their additional illness caused by dementia, which also saves the N.H.S millions. Why should these people be charged for their accommodation and food, no one going into hospital has to pay.
Let us do the same as Scotland we are all in the United Kingdom.
Let us use the 1948 legislation, N.H.S free at point of need.

Looking after everyone from the cradle to the grave.

WE MUST ALL CAMPAIGN TO STOP THE DEMENTIA TAX NOW

To finish on a lighter note. We have one of the best Health Services in Great Britain here in Denbighshire.
• Glan Clwyd Hospital
• Social Services
• Glan Traeth Day Hospital
• Local Surgeries and Medical Centre
• Hafandeg Council Day Centre
• Newcis for Carer’s
• All Voluntary Services
• Alzheimer’s Society (Which now has a Dementia Forum in North Wales.)

Finally
All care workers that have helped to look after Ada have done so with
COMPASSION
DIGNITY AND CARE
Thank you for your time Bill Wilson