Dementia webchat with Professor Alistair Burns, Monday 2 April 2-3pm

You really are getting some interesting visitors to talk with us on here Geraldine - thanks.

Now that we are aware that dementia can be helped if diagnosed early and treated appropriately, I'd like to know how to spot the earliest signs. EG - how do we know when slight memory lapses become significant? What should we look out for in our families and in ourselves?

Sadly I will not be able to take part.

Noting this...

http://www.telegraph.co.uk/comment/letters/9168068/Organising-the-health-system-to-ensure-care-for-the-elderly.html

I also note this...

'The eminent signatories to the above have identified 5 points that require implementation and named four different organisations or members of staff that are to be responsible ... therein I suspect lies the problem.'

And can only agree.

With some experience, why are there so many bodies, still, in delivery, management and even oversight (things can go awry) when it is obvious that such complication and diversification can only add cost and/or error?

I have 2 years' (and counting) worth of more acronyms than you can throw a 'not us .gov' lessons learned manual at, mostly intoning 'it's their fault'.

It's almost like it has been specifically created this way (and defended to the nth degree in resisting change) to prepare in advance for problems that can only be smoothed out under a culture of zero accountability.

Eh??

What have I just read ?

I think it was "conspiracy theory". Conspiracy is not needed - bureaucracy can things up perfectly well on its own without even meaning to.

Reports and responses do not necessarily fix anything, but they may be a step in the right direction.

There should have been a starred bleep between "can" and "things".

'Eh??'

'What have I just read ?'

--

If directed at my comment, I would need a bit more to work on to answer any questions. As I have posed based on..

'happy to answer questions both about about dementia policy and the difficulties faced by families dealing with dementia'

From social services deciding a Mum with £23k in assets and a family on hand a and keen to help care for was enough reason to drop any useful assistance with her case, to chemical coshing by a care home owned by the same GP who was senior partner of the home's surgery, to PCT to CQC to LGO to PHSO all pointing at each other when it went very wrong, I feel they are worth asking so what happened to my Mum doesn't get repeated.

The URL and story linked to is, I presume, clear enough and self-evidently relevant.

'Reports and responses do not necessarily fix anything, but they may be a step in the right direction.'

Starred bleeps, whilst understandable, can get you off lists and isolated from a system itching to 'close files', so a wise precaution to restrain.

I might suggest that in the twilight years, two years is a long time to find errors repeated, so 'reports' are often of questionable value if nothing changes, and 'responses' are, at best patronising, ineffective or, at worst based on willful unaccuracy at high level.

junkkmale I'm struggling with what you are saying, not the issue and not the linked article. The way you set out what you are conveying on the thread is a bit impenetrable for me. Perhaps others have picked up the gist of it. Sorry, perhaps it's me.

'The way you set out what you are conveying on the thread is a bit impenetrable for me.'

Fair enough. Let me retry...

--

'With some experience, why are there so many bodies, still, in delivery, management and even oversight (things can go awry) when it is obvious that such complication and diversification can only add cost and/or error?'

--

As comment on the article suggested, others share my view that there are many, indeed too many different entities involved with elder care, from the moment a dementia sufferer shows symptoms, through suitable care to the point that some flags might need raising if things don't go well.

At the point my mother was diagnosed, I was pretty much left to my own devices. Fair enough when it was mild and she was with us.

But it was a different, horrible story when it deteriorated. In the space of a few weeks I had to manage getting her into a hospital and then out into a proper home... with near zero help or advice.

As things got worse, I then had to manage where she was, wanting her out or managed, as it transpired that they really only wanted those easy to deal with. Hence they wheeled out a DMHOP shrink who had never met her before, for a 5 minute consult before putting her on a powerful pyschotropic. The GP was never in the frame. And I, to my shame, did not question the advice and actions.

The psychotropic poleaxed her, and possibly gave her a stoke. Certainly her speech was affected and she was never mobile again. I therefore looked around, again without NHS/council advice or help, for a facility who could take her and deal with her needs, and considerately. It took me two weeks.

The day I delivered her to her new home (a great one, who looked after her well until she died), they tried to have me arrested for elder abuse, as she had a stage 2/3 pressure sore. I was unaware of it as I had not been told by her previous home. The one run by the same GP who is senior partner of the surgery 'looking after' the residents. No mention of such a serious wound was made to or by her GP.

--

'I have 2 years' (and counting) worth of more acronyms than you can throw a 'not us .gov' lessons learned manual at, mostly intoning 'it's their fault'.'

---

Having been threatened with being sued by the home for non-payment of the balance of the notice period (I got her out asap), I sought help.

I started with the CQC, who pointed at the LGO, who pointed back.

Since then I have stuck like a terrier to the facts, escalating up through the NHS, PCT and not one, but two Ombudsmen, the LGO and PHSO. They have claimed to investigate, but on demanding information it turns out that they either didn't ask much or simply took on word what they were told. The CQC actually tried to claim I had never contacted them, but were caught out by by maintaining a full paper trail. I actually had the top Ombudswoman of both tell me to back away and sign off or else, which for them had the unfortunate effect of my taking it to the NAO committee and my MP, as this issue has become prioritised and topical.

-

"It's almost like it has been specifically created this way (and defended to the nth degree in resisting change) to prepare in advance for problems that can only be smoothed out under a culture of zero accountability."

--

I have had every dodge and weasel and hurdle laid in my way to ensure no one is held to account, nothing is done and nothing changes. Key in all this is the number of contradictory and distracting advices and claims and excuses from vast numbers of vast fund-consuming bodies... mainly pointing anywhere but at solving the issue.

Mum suffered and is gone. In her memory it do not intend to let that pass without comment or, where necessary, challenge. For the sake of others and, as I may get old too, myself.

I hope that is clearer.

junkmale it sounds like you have had a terrible encounter with bureaucracy, but more importantly, your mother was not well looked after until she went into the care home. Thank goodness records were kept.

Thank you for the response.

' it sounds like you have had a terrible encounter with bureaucracy,'

One could say that, yes. But it does not seem to have abated, if currently stalled. Which, in some circles, seems to suit them just fine too.

'...but more importantly, your mother was not well looked after until she went into the care home.'

To clarify, she was well looked after initially in NHS hospitals physiologically. Her needs psychologically and in terms of care planning and direction subsequently, via me (a rank amateur at the time in understanding the condition and handling the 'system') was thereafter near non-existent.

She was well cared for initially by the first care home until they wanted her out, and then it all went pear shaped with, I maintain, at best the wilfull ignorance of her GP surgery, or their complicity. Her treatment at the final care home was peerless. Along with the GP and social services. I had moved her from England to Wales (though to add to the complications between self and state funding for how a patient gets treated in the UK, try adding the move of a few miles across a border, especially for the competing, conflicting acronyms that are added to the mix).

'Thank goodness records were kept.'

As some will, eventually, come to rue, yes.

My mother at 98 has a form of dementia and, thank goodness, we were able to find a caring nursing home when we regretfully agreed with social services that she needed professional care. Before that, she had been living with us. We also had my aunt living with us for nearly 30 years and, briefly, my mother-in-law some years ago. I include this information to show that we do have some knowledge and experience of living with and caring for elderly family members. In my experience, what seems to happen is that a minor illness or accident results in a hospital admission, followed by a prolonged stay in hospital. This results in a marked deterioration in physical and/or mental capacity with the further result that the person is never able to go back home. If you are caring for a family member, it would be a very radical decision not to call for professional help if someone is ill or has had a fall and while you might refuse to go to hospital yourself in those circumstances, making that decision on behalf of someone else is different. If the person could avoid that first admission to hospital, they might be able to continue to live at home. The most unreasonable part of this is that if the patient wasn't old, they wouldn't be kept in hospital at all for conditions like a broken ankle (my mother - 5 months including nearly 3 months in 'rehabilitation') or a urinary infection (my mother-in-law - over 4 months). I have lots of other examples as well. On what basis is the decision made to admit and keep elderly patients in hospital for weeks and months? It seems to be the automatic response wherever you have your accident or minor illness. Why?

This, from today's papers, may be worth noting in context..

www.telegraph.co.uk/health/healthnews/9170951/Health-regulator-gagged-own-staff-against-speaking-of-failures.html

Some comments too.

I too find it difficult to know whether my memory lapses are just that, or a sign of worse to come.
e.g. I often (almost daily) start a sentence, when in conversation (usu. with a relative stranger) and then completely forget what I was going to say.
I can't always remember what I did yesterday or the day before; but there's nothing really dramatic happens in my life, often.
Are there any definite "you-will-only-do-this-when-dementia-is-nigh" signs?

why dont these 'bodies' ask the people who look after people with mental health problems of all types how to care and look after their loved ones,most times commen sense prevailes,my husband the most gentle of men became violent as his dementia progessed I was told to call the police,how would someone mentally ill cope with being confronted by the police, and how would a policeman know how to deal with someone they had no knowledge of, a friend of mine ,a carer is being given four hours training on dementia patients who will be cared for in their own homes, I can't wait to hear what this will entailshock,

I would dearly love to know how to keep dementia at bay.What specific precautions can we take that are proven to be of any use?I have read various articles on the subject but struggle to find a consensus .

Yes, I'm curious about how the person suffering from dementia perceives her/his condition. In a recent novel by Henning Mankell, the hero Wallander has blank moments where he is aware of not knowing where he is or anything about his situation; then his memory comes back fairly quickly. At the end of the novel, it is reported that he has succumbed to Alzheimer's. My question: is that an accurate rendering of how one feels? As opposed to the very familiar short-term memory lapses, are there total blanks, if momentary, that could be clues for the victim to onset of the condition?

Can dementia be prevented or delayed by keeping both the body and brain active - I do lots of sudoku, crosswords, quizzes and enjoy getting involved in debates on all kinds of subjects. I am very fit and active and have a very healthy diet. I have mild high bp which is kept under control by 2.5 mg of Ramipril which I will take for the rest of my life.
My mother stopped taking her bp medication when she was 86 because she had some minor side effects - she did not consult her doctor. We think she might have had a series of small strokes as she became progressively more forgetful and whilst she was never diagnosed with Alzheimer's after three years she was unable to follow a conversation or remember her family. She was never physically incapacitated or in pain, just constantly anxious and tearful. When she was 90 she developed pneumonia but was given intensive treatment in the NHS hospital and survived for another year of misery.
Our complaint was not that she did not receive enough treatment, but that she received too much when continuing to live was not in her best interests.
Eventually, she 'turned her face to the wall' and refused food and then drinks. My brother would not give consent for her to be fed against her will.

I would like to leave a living will with my family, instructing them to withhold consent for resuscitation or treatment if they believe it is not what I would wish - would this be honoured?

greatnan The professionals would honour your living will - if they knew about it - but I believe the family's wishes are also taken into account, so you need to tell them about the will, have them read it and talk about it and know just what your wishes are. Copies of ours are lodged with our lawyer, our GP, and with the team who are responsible for DHs cancer treatment, and there is one in our box of important papers.

The lawyer assisted us to draft it, using a standard form of words which make it quite clear what treatment you do not want - aggressive resuscitation, and so on - and what is acceptable - water, painkillers even if they shorten life, palliative measures. At the same time we signed powers of attorney to be stored for the future, to allow each other or our children to make financial and medical decisions for us if we are incapable of doing so. Lawyers cost money, but getting it organised early saves in the long run.

The best time to do this is before it becomes urgent. MIL had not done this, and she developed Altzheimers. We believed that FIL would outlive her, but he died suddenly and we had to take extreme measures to clear up their estate and sell their house.

What excellent advice, Ellergran, I will certainly put the living will in my 'In the Event of My Death' folder after discussing it with my daughter in New Zealand. I think I will have to amend it when I emigrate as the laws may vary in different countries. I will also make an enduring Power of Attorney in her favour.
I have a Swiss friend who has a duplicate of my folder - she and her husband are members of Exit but you need an address in Switzerland to join.

My Mum has just been diagnosed with vascular dementia. It has taken almost nine months from first taking her to the doctors up to visiting the consultant for the diagnosis. We were kept waiting for almost an hour when we went to see the consultant, and then it took another month before she received her medication. The whole thing was a nightmare and I suspect that she is not the only one whose diagnosis and treatment have taken far too long. If she could have been dealt with in, let's say, six or eight weeks she would have been on the medication to slow it down and maybe would be in a slightly better state than she is at the moment. On the plus side the care and attention she is receiving now from the Memory Nurse is second to none. It is high time the elderly received better and faster treatment than is happening at the moment.