Showing posts with label dementia. Show all posts
Showing posts with label dementia. Show all posts

Monday, 21 May 2012

Care in the Community

This week is Dementia Awareness Week. Have a look at :-



and check out, the excellent Alzheimers Society website.

I was going to write about this subject anyway but today it has extra poignancy for me.

As I have commented before, my father has severe dementia and it is something we have lived with for at least 7 years. I am his registered carer but my father currently resides at a NHS run facility.

Trying to get appropriate care for my father since his diagnosis has been one of the most time consuming, stressful and at times futile things we have ever been through.

Some of the highlights include been my father being lost by Heartlands hospital and him wandering the streets of Birmingham for 48 hours whilst myself and the police searched for him. This actually happened twice ! One of his nursing homes throwing him out and just ringing an ambulance and telling me after the event. etc, etc. In and out of hospital because there was no where else for him to go etc etc.

My father has been for the last 2 years been cared for at an NHS facility which has provided a high standard of care and stability and its been a blessed relief.

Last week I was asked to come in and take part in a " care review ". I attended this weekend and now know it is highly likely he is going to be thrown out of his current facility.

I was presented with a deputy ward manager who went through a standard questionnaire designed to access my fathers care requirements based on his mental health. I understand that a physical health module will also be completed but I'm apparently not required for that one.

The questionnaire had approx 8 questions with multiple choice criteria and answers designed to access his condition and nursing requirements. Ranking each requirement from non to low, to moderate all the way to high. There is then a section for the accessor to write a narrative re each answer.

Through out this process which lasted approximately 20 minutes ( most of which was me asking questions ) it became apparent that what was happening was an assessment was beening done as to whether my fathers health requirements were severe enough for him to remain under his current care regime. At no point was this told to me upfront , I had to tease the information out by deliberate blunt questioning. Nor I am apparently going to be given a copy of the completed ( with assessors written comments ) questionnaire. I have to ask for this in writing and it may or may not be available to me. Finally I was asked to sign nothing and it was clear that my attendance was out of politeness and not a mandatory part of the process.

My questioning illicited  the fact that the remit of facility has changed ( no notice to me at any point ) and they are now only supposed to care for the most " challenging cases ". As my fathers condition has now worsened  to the extent that he can no longer walk, is incontinent, has no idea who or where he is, who I am and generally he is so feeble that he cannot cause a fuss ie he is  deteriorating to becoming a vegetable, this no longer presents a challenge for specially trained nurses, any type of nursing will be sufficient.

It is highly likely that my fathers care will be passed from the NHS to my local social services.

So once again my fathers care appears to be a in a state of flux and my stress levels are rising. The process will apparently take months and I have no faith whatsoever in my local authorities social services dept. Thankfully I have not had to deal with them for several years but last time they were pathetic in their efforts. I hope for my fathers sake and mine that they have improved.

Its time for a proper serious debate about the challenges of an ageing population
and dementia. How we as a society are going to care for, support and fund a coherent care package that provides us all with a quality of life and care that we would wish for ourselves. Everybody knows this so I say to our politicians, GET ON WITH IT !


Friday, 27 April 2012

Dementia for Dummies

Last night on BBC2 Louis Theroux presented a documentary on dementia.

Entitled " The capital of the forgetful " it can be found on iplayer here.

I'd encourage everybody to watch it.

Dementia devastates lives and with a growing and ageing population the problem is getting out of control.

Currently over 800,000 people have dementia in the UK and that is predicted to grow to over 1,000,000 by 2021.

The financial cost of dementia to the UK will be over £23,000,000,000 in 2012.

Check out the excellent Alzheimers Society website and their shocking stats page.

What the documentary does very well is give you a real reality check as to the destruction of lives.

The best medical research now believes that dementia is not a sudden onset disease but builds over 20-30 years. And during this onset your mental abilities decline and the speed of cognitive decline accelerates.

So if we ignore the costs and the fact that there is no coherent plan to meet our need now, or into the future, what is our problem ?

The state pension and public sectors pensions ! With the retirement age ever extending, more and more of us will be working into our late 60's and early 70's, how will dementia impact on the states growing requirement for income tax and national insurance. I have yet to hear from any sage of wisdom what the state expects me to be doing to earn an income at 67, 68 ? And are the projections being used to calculate the states requirements based on my earning potential at those ages recognising any physical or mental decline ?

Confession time, the writer is the registered carer for my father who has had dementia for the last 6 years and who is currently having residential care provided by the NHS and so I have seen this awful affliction from a very personal view.

I want to criticise one core aspect of last nights programme. Only for a very short segment of the programme did we witness people with the later stages of dementia ( the 4th floor if you watch the programme ). Choosing my words carefully, the majority of participants were early stage sufferers who were not showing large amounts of distress. I've spent the last 2 years with my father surrounded by later stage dementia suffers. Drifting off into lala land might be for some but equally being trapped in their own worst nightmares for years is a reality for many.

Visiting a dementia ward is harrowing and should be avoided at all costs. The thing that hits you is the howling and screams, the continual screams 24 hours a day. In a long gone moment of lucidity my father turned to me and asked to be killed ! As I was left trying to mentally process what had just happened, the lucidity evaporated. It was replaced with  more screams.