Dementia Screening

Histopathogic image of senile plaques seen in ...

Image via Wikipedia

I wrote up some reflections and thoughts about my time at the Rally and March on Saturday for Community Care and my piece can be read here.

I also wanted to comment about the proposal that the Alzheimer’s Society suggested that everyone over 75 is screened by their GP for dementia. I can see where they are coming from – there certainly needs to be a greater awareness but honestly, I’m not sure if this is the answer.

The idea of the screening is for the GP to offer a type of MMSE (mini mental state examination) test and to have a discussion with a family member/friend in conjunction with this.

Whilst I agree that awareness and early identification of dementias can and must be promoted, I’m not sure that general screening would be of as much use as the Alzheimer’s society do.

I believe it would probably be the people who are more reluctant to go to their doctors who might need the tests the most. There need to be a way of thinking through better targeting of information about dementia and what can be done for people who are diagnosed early in terms of drug therapies and lifestyle changes.

Perhaps if doctors surgeries make contact with people in that age group with whom they have had little contact for months or even years. My concern is the general screening will focus time and resources on those who are  most likely to access the services in any case.

The problem with this is that GPs surgeries are now routinely ‘deregistering’ patients if they don’t attend and don’t send back letters which ask them to confirm their address/registration with a particular surgery. This has frequently been a problem I’ve seen at work as older people who might be more forgetful or just less engaged with responding to correspondence end up without any GP at all.  I expect it happens less in smaller towns and villages where GPs know their patients better but in large cities and inner cities, it is a big problem.

It doesn’t need to be a doctor that carries out the screening tests and conversations either  – perhaps there is scope to use wider ranges of professionals – not to make diagnoses  but to refer for more extensive discussions with doctors. Perhaps you know, even social workers in adult care settings could be involved in identifying some of those people who might be better targeted or leaving information or even adding a few questions about memory and any concerns about it with the people as they call or are requested to call for assistance .

Day centre staff (where they still exist) could have some information to distribute.

General hospitals could also share information and have discussions (this could be a discrete post rather than adding further burdens on currently stressed staff).

It’s useful to look at the prevalence rates for dementia in England and Wales and it is possible to see how it increases after 75 and why this age is the point at which the tests are being proposed. Perhaps even more useful is looking at the incidence figures (new diagnoses) after 75.  It seems that if there is some type of screening it should be repeated at regular intervals rather than a one-off screening at 75.

Maybe it is the way to go. After all, the Alzheimer’s Society has much more expertise in this area than I. I just see so many people whom I know would not go to a doctor’s surgery for a test and I wonder how engaging the process could be.

Often diagnoses are arrived at by family members discussing concerns with GPs in the first place but how to ‘catch’ the diagnosis earlier? Engage those who are likely to see this section of the population and disseminate information.

Information and awareness have to be the key – get the message out that a diagnosis is the start and not the end of help.

I know there was also some discussion about whether someone would want to know if they had a diagnosis of dementia.

Would I want to know if I had a dementia diagnosis? Absolutely and without doubt yes.

I would want to be able to make plans. I would want to be able to benefit from assistance available.

I don’t think general screening is bad. I think there needs to be more thought in how it could be implemented and ultimately, any discussion about dementia on television is a good discussion.

Johann Hari’s manifesto for change in care homes

A week or so ago, Johann Hari, a journalist and columnist for the Independent, wrote an article about his grandmother and the poor to verging on abusive care pathway that she experienced through devastatingly shoddy system that was and is not fit for purpose.

Today he writes again for the Independent proposing a series of changes across the sector which would improve the quality of service delivery.

I have a massive amount of respect for Hari and he writes very eloquently and passionately. I desperately hope more people listen to him than have listened to us, within and engaged with the sector who have been shouting, Cassandra-like, for so long.

His proposals are quite straightforward.

– Support elderly people to stay in their own homes wherever possible

This concurs with the evidence produced yesterday by the Alzheimer’s Society in a report published yesterday ‘Support.Stay.Save’ which concludes that while care in the home (rather than premature residential home placement) is a favoured outcome – the quality and training of staff is a serious issue – however if this were challenged, promoted and improved, there would be an eventual saving in the costs of placement in residential care.

Hari says’

There is a whole range of services that make this possible – from Meals on Wheels to home helps who are there to help an old man to shower in the morning and get into bed at night. We should be stepping them up, to keep anybody who possibly can free and independent. Instead, we are ruthlessly stripping them away.

and it is this that breaks my heart. We are tightening criteria, raising the bar to access support and increasing the cost of these services to those who may be responsible for their own costs. Hot meals on wheels delivery is not a default position anymore – they’ve been replaced by a fortnightly delivery of frozen food. This is a saving on paper to the local government but in the longer term denying this additional personal contact of a regular face delivering hot meals, is a much larger cost.

Councils have tendered out for the services at the lowest baseline cost. Care staff are provided on minimum wage, with little, if any, training and barely any dignity in their employment conditions so no wonder that corners are and have been cut. We need to provide the best possible rather than the cheapest possible.

They are better off with their families – so offer the care home funds to them first

Again, a seemingly obvious point. Hari states that residential care can cost upwards of £450 pw. Why isn’t that same amount of money offered in the home? It makes perfect sense. It makes perfect logical sense. Of course, some people will always need the 24 hour care. To be honest, we tend to fund increasingly higher packages of care in the home and it isn’t unknown for similar levels to be provided. I have one service user who has a package of virtually double that in her home (as a personal budget) but am frequently told that that is an unusual case and it’s only possible because a family member takes on a significant amount of care.

Local authorities do need to get over their aversion to funding overnight care in the home though. That would immediately make this more possible. Personal budgets theoretically should allow this point to be immediately actionable. In practice, it is not easy to squeeze the funds out of the interminable RAS (Resource Allocation Systems).

Make being a care worker a desirable profession

Hari says

Today, our elderly are looked after by people who are paid the same amount as street-sweepers, and have the same level of training..

This breaks my heart. I spent 7 years working as a care assistant in a residential home. I applaud this point. There were times when I met with friends from university and I was almost sneered at because of my job. Actually, scratch that ‘almost’.

‘When are you going to get a ‘proper’ job?’ I was asked. Eventually the pressure of that pushed me into social work. I am glad I did it but it is hard to understand where the sneering came from. Sure, money is an aspect of it but it’s wider than that. Sometimes the management seems to join in with this scornful and hierarchical approach to care workers – it’s important to remember that if a manager is not going to treat staff well and with respect you can be sure that residents will not be treated well either.

Increasing not only pay but conditions of service – decent holiday pay, sick pay and training – would make a difference. I’d like to see more of a line of career progression as well.

Retrospectively, I look back with a massive amount of fondness to those days. I was lucky to work in good homes where I was instilled with a good work ethic and values that supported resident’s rights. I know how easy it is as a worker to ‘go native’ within an organisation and agency if the work ethic and values are not good. It leads to spirals of dispirited behaviour.

I wish every social worker had had the experiences I had in hands-on care work. It was invaluable and it shapes a lot of my actions and values today. I doubt many do or will in the future. That’s more the shame.

Now, I am so proud that I was a care assistant in a residential care home. I wish I had been at the time.

Make every home publish its staff-to-residents ratio

Theoretically this should be possible. It should be easy to access. It makes a big difference. When relatives go to visit care homes I advise them to ask about this and perhaps ask the member of staff showing them round how long they’ve been there and what the staff turnover is.

Clarity would be a fantastic and simple indication of whether a care home runs on bare minimum or below minimum staffing ratios. Unfortunately the CQC doesn’t really help much here.

Hari says

Every parent knows how many pupils there are per teacher in their child’s school. Nobody knows how many carers there are per resident in their granny’s home. I asked at every home I considered: nobody would tell me. But this can make the difference between a good home and a terrible one.

I’m surprised that no home could tell him when directly asked. Maybe because sickness is not taken into account – some homes seem to constantly run below the CQC required level due to ‘unexpected sickness’. The CQC could monitor this with spot inspections. It doesn’t. Or only when things are literally falling apart. It makes me angry.

Impose minimum nutritional standards for the food

This makes sense again and a menu list can’t always indicate what the quality will be like. However, unlike Hari, I have seen homes that have delivered well on this front. I am sure I’ve been to many many more over the years though.

The ‘Scores on the Doors’ system of food hygiene ratings has been extended to residential and nursing homes so perhaps that is a start.

Well, the best start is for the person responsible to think ‘would I want to eat this every day’. No-one should be serving food they would not want to eat themselves.

Change the attitude

This is a broad brush that Hari paints.  The example he gives is a regimented imposition of bed times and morning times. There is something of the way that care homes are organised that sometimes some of the personal touches and individuality can be lost. This does differ in different care homes and there are as many attitudes as there are people. The key though is to emphasise individuality in choices and not to impose on others.

For me, it’s a matter both of training and staffing levels. Treat every resident as you would want a close family member of yours to be treated. It’s a very simple tenet and an easy one to remember. The difficulty is that not enough people will practice that way and so staff as well as residents are in danger of becoming institutionalised.

Stop the mass prescription of anti-psychotics to rebelling residents

This is self-explanatory really and to be fair (as Hari notes) it is one point that progress is definitely being made on. It is far less common now than it has been in the past. Quite rightly. Anti-psychotics can be dangerous for people with dementia.

Restore proper inspections of care homes

For me, this is a massive key to the whole process. The CQC needs to take responsibility for the decline in the standards and to restore spot unannounced inspections, day and night, weekend and weekday to EVERY SINGLE residential and nursing home in the country.

It is wholly unacceptable that there is a reliance on cheaper ‘paper’ inspections or ‘desk-based’ inspections and it is wholly attributable to staff being laid off by the CQC.

I have my sources (actually a couple of very good friends of mine whom I worked alongside in those days when we were all care assistants in the same residential home!) who work within the CQC and they have been given much larger caseloads and have less time to do more inspections.

Inspections need to put the providers on the spot and really and truly inspect. They need to check that what homes write about staffing ratios is really what is happening on the ground. We rely on them. They do not deliver.

As Hari says

In 2005, there were 50,000 physical inspections of care homes. This year, there will be a quarter of that number. David Cameron has called for “light touch regulation” of this sector, so homes are increasingly being asked to engage in “self-assessment”. That means they will be asked to fill in a few forms.

This, more than anything, makes me furiously angry. Light touch regulation DOES NOT WORK. It leads to increased abuse. I can give so many personal examples that I have witnessed. I will try to keep shouting until the system changes.

I wrote about this last November and have no doubt I’ll be writing about it again. And again.  And I’ll mention again because I think there’s a relevance that the Chief Executive of CQC is Cynthia Bower who was Chief Executive of NHS West Midlands when Stafford Hospital was delivering contemptible and appalling care. Hardly a CV that instills much confidence.

Make sure care homes that are shut down stay shut down

This raises the issue that care homes can fail and then just re-register and open under a new name which should be wholly unacceptable.

Again, I wrote about this last November when Private Eye and Compassion in Care were trying to gain more information about care homes that were closed down.

As Hari says in his piece, this was brought up by File on Four and Compassion in Care a couple of months ago.

Impose serious criminal consequences for elder abuse

There is a new law of wilful abuse of those who lack mental capacity which was introduced in the Mental Capacity Act 2005 but I agree with Hari in that the legislative framework for adult safeguarding needs to be as strong as it is for safeguarding children. Our hands are tied and the punishments do not fit the crimes.

It’s an excellent piece by Hari and I wholeheartedly applaud it. I hope more people will listen but we have to keep shouting as loudly as we can to improve the quality and attention of care for those who lack capacity and for all people who rely on others for support.

We all need to shout. Not just those of us who are directly affected or who have parents or grandparents who  might be affected (as we all may be eventually) but anyone who cares about living in a civilised society as well.

Perhaps its endemic of a society that wants to push the uncomfortable realities of ageing ‘under the proverbial carpet’ that has led to institutional abuse but our humanity is lost if we don’t stand up against it.

This is not a party political issue as significant damage was done under the last government but this government can’t get away with it either.

And thanks to Hari for raising these issues among a wider readership. I wish so deeply within my heart that this piece shocked me. Unfortunately, after many  years working in the care sector, I’m sad to say it doesn’t.

Admirable Admiral

John Suchet, a newsreader, hit the headlines yesterday by running with a series of interviews about his wife, Bonnie’s diagnosis of Alzheimer’s and the way that he, as her carer, had managed this diagnosis as well as the support that he had received.

He spoke of the help given by Admiral Nurses – a kind of Marie Curie-type set up – with specialist dementia nurses rather than cancer nurses.

image Muffet at Flickr

Anyone watching or reading the interviews given cannot help but be moved by the way that Suchet describes the fading of the memories of the woman he is married to.

Carers do need a lot of support through the process of a diagnosis of dementia.

One area that Suchet spoke about was the need for a wider roll-out of the system of Admiral nurses – although I suspect that is what the Dementia Strategy is envisaging. And in the course of his explanation of the role of the nurse, I recognised a lot of the roles that I undertake myself – or at least endeavour to – from explaining and preparing the changes in relationships and needs as lover becomes carer.

Of course, there is not capacity for the work in CMHTs to be replicated nationwide – nor for everyone who has a diagnosis of dementia to be allocated a care coordinator and the service that Admiral nurses provide is far from national.

In fact, the terms of postcode lottery were mentioned frequently.

I have often thought that if I had a magic wand (or failing that, just more authority and experience) to change the service we provide, I’d like to allocate specific workers to carers. I definitely think a lot more needs to be done, especially with older people where carers are not as able to attend the support groups that exist across the borough.

We don’t have Admiral nurses in our borough but we are blessed by a wonderfully active local branch of the Alzheimer’s Society.  I have no doubt that a roll out of a service which provides support and information could be anything other than beneficial.

Sometimes it is a matter of having a telephone number to call and a familiar voice to answer some of the questions, doubts and worries that come with the onset of dementia.

I was considering with the public campaigns of Terry Prachett and now John Suchet in going public regarding dementia, if we are turning a milestone in terms of publicity.

I also ponder on the fact that the people who become the public spokespeople for dementia and Alzheimer’s are those affected by early onset Alzheimer’s. I wonder if it is part of a marginalisation of older people or just an ability to identify more with people who don’t seem to be ‘so old’.

Not that I’m knocking it – I think identification with public figures does go a long way to societal acceptance. Maybe people who had not thought of discussing their experiences of their or their family’s dementia might be encouraged to do so as a result of these pushes.

In any case I  hope some of the stigma that exists around dementia will drop away and people will feel more able to talk.

It does bring me back to a discussion I had a couple of years ago with the wife of a man who has severe depression to the extent that he pretty much wasn’t getting out of bed. She confided to me that she almost wished she could tell people he had dementia because she thought they would be able to understand it better than telling them that he had depression.

Food for thought.

Pratchett, BBC and Infra-red Helmets

I noticed from some trailers on the TV that next week (and the week after), BBC2 is airing ‘Living With Alzheimer’s’. It will be broadcast in two parts on February 4 and 11.

The BBC mini-site includes an interview by Terry with Prof Sir Michael Rawlings from NICE.

Apparently one of the things he will do is to trial an infra-red helmet that researchers say may improve cognition for people with dementia. The Alzheimer’s Society have released a statement particularly relating to this

‘We welcome any new initiatives to help fight dementia, but the infra-red helmet is still at an early stage of research. We need a proper clinical trial to determine whether or not it is a safe and effective treatment for people with dementia.

‘700,000 people are living with dementia and one million people will develop the condition in the next ten years. Many would try anything to stop this devastating condition robbing them of their lives.  It is vital that we do not generate false hope and that all potential treatments are rigorously tested.’

False hopes are indeed, not a Good Thing – but I have to say I’m intrigued by the idea and have made a note to remember to watch the programmes.

And I am grateful that Terry is so open about his Alzheimer’s and by sharing his experiences he is and has been able to break down a lot of preconceptions about the disease.

image pburghstever at Flickr

Lest We Forget

Yesterday was World Alzheimer’s Day. Events around the world were held to raise awareness about Alzheimer’s Disease and it’s impact. Some countries are holding study days, others picnics and walks. Different ways of drawing attention to the disease and pushing it into the public consciousness.

I know I am a day late but I thought I’d recognise it by sharing some of the links that I have collected that are related to Alzheimer’s. Some are personal blogs, others are resource or research blogs. Some sites that share information, others that share news.

Hopefully there will be something among them that will prove useful. I know I have found them helpful, personally.  There are many more resources ‘out there’ and I make no attempt at comprehensiveness!

Some don’t fit neatly into my categories so there is some wiggle room there.

image *Micky at Flickr

Personal Blogs

Alzheimer’s Team

Fading From Memory

Wit’s End

Monday’s with Mother – An Alzheimer’s Story

As We Lived Before

Resource/Information Blogs

Forget Memory

Al(t)zheimer’s

The Myth of Alzheimer’s

The Tangled Neuron

Alzheimer’s Notes

Mothering Mother and More

Resource Sites

Alzheimer’s Society

Alzheimer’s Research Trust

Fisher Centre for Alzheimer’s Research Foundation

Alzheimer’s Association

I’m sure that there’s a wealth of information ‘out there’ that I have missed and if anyone has any suggestions, I’d welcome them. Of course, it is important to remember that Alzheimer’s is one kind of dementia – but it is by far the best known.

Alzheimer’s Disease International has developed a charter to promote the awareness of Alzheimer’s worldwide. Go and sign – it doesn’t take long! They have also released a short film to accompany it.

 

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Dylan Thomas – Do not go gentle into that good night

Avoiding Dementia

This week is Dementia Awareness Week and the Alzheimer’s Society are focusing on prevention and things that people can do to reduce the risk of developing dementia.

I was going to comment that the things they are suggesting are the expected ones but then realised that might be expected to me because I work in the field. Sometimes it’s easy to take for granted things that you are aware of on a daily basis.

The focus is on reducing the risk of vascular dementia (which makes sense as the causes are more obvious) by maintaining a healthy lifestyle

Through

Image via Wikipedia

Lance Cpl. Anthony M. Madonia emerges from the...

Maintaining a Healthy Weight

Image via Wikipedia

A sphygmomanometer, a device used for measurin...

Watching Cholesterol and Blood Pressure Levels

JonF119 JonF119 at Flickr

Not smoking

I think there are lots of health issues that could be avoided with those three points so sounds like they are all worthwhile!

Keeping the brain active is another key as well

Anyway, the Alzheimer’s Society have put together a downloadable booklet which explains all these aspects in greater (and more colourful) detail.

It’s a good piece of work and definitely worth a look!