Keeping Mum

I was sent information by a PR company about a book – Keeping Mum.

Keeping Mum: Caring for Someone with Dementia

I don’t usually respond to requests for information and advertising (and to be clear, this isn’t advertising as I haven’t been paid!) but I thought it might be a book that could be potentially interesting to people who might come across the site. I haven’t actually read the book yet and nor did I request a review copy – simply because I know I have such a backlog of books and lack of time at the moment but the information from the press release is as follows

“When Marianne Talbot’s mum was diagnosed with Alzheimer’s disease, Marianne found it impossible to put her mum into a care home. Instead Marianne cared for her mum in her own home for five years, whilst chronicling her experiences in a blog for three of those years.

The blog has now been published into a book called ‘Keeping Mum’. Heartwarmingly funny, frank and at times emotionally tearing, this book is a record of what it is like to care for a beloved parent whose mind is fragmenting. It is written for anyone, anywhere, who has anything to do with dementia or with caring.

The book also includes some great tips on daily living, managing others’ finances and the social care system. For more info please visit: http://www.keepingmum.org.uk/

Talbot’s blog can be found here and extracts from the book can be read here.

It has received excellent reviews on Amazon and I’m hoping that I will be able to find time to read it and review it properly but in the meantime, it seems to be worth checking out.

Dementia Screening

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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.

An Assessment of Capacity

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I am constantly assessing capacity. It isn’t always done on the formal paperwork that we use when a major decision or one likely to have major consequences is being made.

Sometimes it is  a simple action that might be almost subconscious. Does the person who is drunk on the night bus know which stop he wants to get off at? Sure,  he’ll have capacity tomorrow but by that time he might be in Hertfordshire.

I wouldn’t say it is something that only happens at work. Incapacity happens to all of us at times. It might not be drunkenness but rather sleepiness.

Capacity and incapacity doesn’t just happen to older people with memory problems.

However, the Mental Capacity Act 2005 is very clear that attempts should be made to wait until a person has regained capacity – if it is a temporary state – when a decision is necessary.

And each decision and assessment of capacity is taken independently. Someone can have the capacity to make one kind of decision about a preference of daytime activity or preference about living arrangement but lack capacity over another matter – like managing finances.  It is not wholly uncommon for me to do a couple of capacity assessments simultaneously and have different results for each.

I want to look back at a  capacity assessments I’ve done in the past. I’ve changed or amalgamated details to anonymise the scenarios and obviously the names are invented!

Mrs Smith has Alzheimer’s Type dementia. She gets very confused by details and has a deteriorating short term memory. She lives alone. I was asked to assess and make a decision about her capacity to manage her finances due to some concerns that she had been giving money to a ‘friend’ who wasn’t really a friend and was now hassling her for more money.

It seemed initially quite straightforward.

The Capacity Act specifies 5 principles and on that basis I undertook the assessment.

The first is to assume capacity unless proves otherwise. This is sometimes quite a  hard one with some background information in your hand. It is more difficult to assume this position than it might seem.

All practicable steps must be taken to help that person to make a decision

A person is not unable to make a decision because their decision is unwise or we wouldn’t agree with it

Any decision taken on behalf of someone who lacks capacity must be done in their best interests

and – it must be the least restrictive option.

With those principles in the back of ones head – there are 2 other things to consider when actually assessing whether someone has capacity to make a particular decision according to the Mental Capacity Act 2005.

Firstly – there has to be some kind of ‘impairment or disturbance of the mind or brain’. This can be permanent or temporary and is incredibly broad. but then, this disturbance or impairment has to be sufficient to prevent them from making a decision at that time. If you can wait for a decision, you must.

These kinds of assessments would take place thousands of times in hospitals up and down the country as people are admitted who lack consciousness and decisions have to be made before there is a chance to ask about treatment choices.

In the case of Mrs Smith, I am visiting her at a time of her choice – late morning – we are in her home and she is familiar with me. Her dementia would be the impairment or disturbance of the mind or brain and while she has good days and bad days, the lack of significant variance in her cognitive functioning is sufficient for me to be assured that a time delay would not lead to her condition improving.

Having passed those hurdles there are four parts to the actual capacity assessment.

Namely that Mrs Smith

1. Understands the information relevant to the decision

So I ask her in general about her finances – how she gets her money, how much money she gets, what would she do if her money wasn’t available one week or didn’t turn up?

How much does she spend on her weekly shop? How much is a loaf of bread?

These might sound minor but it builds a picture for me of her understanding of finances and proportions of money. If she thinks a loaf of bread costs £50, giving £50 to her friend is going to have different implications to her.

These are also fairly straightforward questions to build into a conversation. It doesn’t have to be a form-filling frenzy and ideally should be in the form of a relaxed conversation.

I also need to be clear that Mrs Smith understands the implications of her actions.

So I might ask about savings and what she would do if she were £50 short one week – would she still have enough for the essentials?

2. Can the person retain the information given

I might ask back some of the questions I’ve asked previously or just add a gentle reminder or two about what I’ve already said.

Where was I? Ah yes, thanks for that, Mrs Smith, I was asking you about your pension, wasn’t I?

3. Weighing up the information as a part of the decision-making process

So Mrs Smith, you know when you are £50 short for the pension because you’ve given it to Mr Brown.. what is the result of that?

Sometimes someone might have a particular ‘block’ about the consequences of a particular actin – so Mrs Smith might say, I know that I am short but there’s always more money where that came from. I never run out of money on my £95 a week pension and lack of savings.

OK, not the best example but she  might be able t retell me the outcomes but not relate them to her situation directly or use the information given (she is £50 short) and find the relevance in her own life.

But that’s isn’t what she said.

She said that she had always given money to Mr Brown. Yes, it left her short of cash as it always had, did and would but she would struggle by. She just bought less.

4. The last part is that the assessee has to be able to communicate the information back.

Every effort has to be made to facilitate this for people who might have some kind of sensory impairment. Any kind of communication ‘counts’ – it doesn’t have to be verbal at all.

Mrs Smith was able to talk profusely so communication wasn’t a problem for her.

In the end, I decided that she did have capacity to make decision regarding her finances and fell into what I, personally, would consider the ‘unwise’ decisions area. She had, I learnt, given money to people who asked her for help, for many years. This was not new behaviour when she developed Alzheimer’s. She was more vulnerable now but that is for the safeguarding procedures to manage.

Just because she acts in a risky way doesn’t mean that she lacks capacity.

Just because she need to take actions to protect her, doesn’t mean that she lacks capacity.

It is just a simple example. I hope it’s useful to someone ‘out there’ in understanding the process.

We have lots of forms to complete, of course, but I try to jot down a few questions in advance that might take me through the first stages of ensuring someone understands the decision and has weighed up the information given. Each decision though is unique.

I would involve family and friends as far as possible because it builds a picture of who that person is and was and what they would want if a decision has to be made on their behalf.

Sometimes it is too easy to assume that someone lacks capacity from looking at their history and documentation.

Sometimes the harder decisions are to be made when capacity exists.

Lack of capacity does not just mean ‘we can make a decision for you’ – the decision has to be right for that individual. Not right for the professional. Not right for their family. Not what minimises risk.

But what would that person choose to do if they were able to.

It can be more of a quandary than first appears and is never a decision to take lightly.

A Home to Fit

I have worked with Mrs G for about 18 months. She has a degenerating dementia and is becoming more physically frail. Unsurprisingly this is not an uncommon basic scenario that rears it’s head at work. Mrs G has no surviving family but she was a very active local politician – involved in lots of causes and has wide and varying groups of friends who have endeavoured to keep an eye on her and provide substantial care and support for her over the last few years. It just goes to show that sometimes the links of friendship can be just as tightly bound as those of family.

A conference of friends was called yesterday. There were a fair few people who all have an interest in her wellbeing. We talked about residential care. I first raised the prospect of residential care for Mrs G shortly after I was first involved with her. I felt that things were not going to improve and that she really needed more support than could be provided at home. I was wrong and happily so. Friends came out of the woodwork and banded together to augment a formal care package with lots of informal support.

As I spoke to Mrs G yesterday, she wasn’t really able to follow the conversation or the flow. She is a sociable person by nature who, I think, if we can find the ‘right’ fit of residential care home – may actually enjoy an aspect of it. I know exactly what type of care home I’m looking for – one with a bit of spirit to it and character. Preferably one that might have room for a cat as well. It isn’t an impossible call because I’ve known it to happen but I have to say the prospects aren’t looking too hot.

Sometimes I despair at the generic nature of some care homes. I know there is an optimum economic way of providing care to the most people at the lowest possible cost. I also know some care home managers that care enormously for the quality that they are able to maintain for those who use their services. It can seem like looking for a needle in the haystack at times though.

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Dementia and Hospital Stays

Today, Community Care reports that the Alzheimer’s Society has called for patients with dementia to be discharged earlier from hospitals as this would save a significant amount of money.  They conducted a survey of 1300 carers of people with dementia, about 650 nurses and 500 nurse/ward managers to find that 86% of managers said people with dementia spent longer in hospital that others admitted with the same medical conditions and 49% of carers said hospital stays had been longer than they had expected.

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There are other figures there but to me there is an obvious reason for these figures. Firstly, most ward managers always think people are in hospital longer than necessary. I am working with a man who is currently in the local acute hospital’s general medical ward. He fell and broke his hip. He has been ‘ready for discharge’ four times – on each occasion as I have arranged his discharge – I have been told that he has deteriorated further and is unwell. But on each of those ‘almost’ occasions, I have received all the delayed discharge paperwork and have created no small amount of work to try and set things up for him.

Currently there is a wish to rush people out of hospital. Where I work, there are very few dementia residential placements in local homes. We meanwhile have no provision for block purchased intermediate care placements – no wonder then that there are some delayed discharges but I wouldn’t expect ward managers to say anything other than that because often they are at the sharp end and cannot understand the implications of poor commissioning decisions.

I would also imagine that with some people with dementia there might be issues of capacity to explore more fully before a discharge can be planned and possibly more risk assessment in place to ensure safe discharges home. I’m not saying it is right that people with dementia have longer in-patient stays but I’m also not sure that the Alzheimer’s Society calling for £80 million to be saved by discharging people with dementias a week early is anything other that attention-grabbing without a further look at the reasons.

I would say if there were any call for the funding that could be saved by acute hospital stays when they are not necessary, it would, in our local area anyway, be better served in more longer term planning about the need for beds specifically for those with dementia and also perhaps a more substantial mental health liaison team that works specifically with older people with dementia as seemingly the funding for the liaison work doesn’t stretch very far into the ‘older’ age group.

One of the more worrying aspects highlighted in Community Care is that

The report also identified problems with staff training with 54% of nurses saying they had not received any pre-registration training in the illness. Of particular concern to carers was a lack of help with eating and drinking which was often linked to deterioration in patients’ physical health.

We had a brief discussion in our team not long ago about care of dementia patients in general hospital wards. It is understandable that time and capacity is an issue that there is not more time but perhaps having more specifically trained additional members of staff to provide care as opposed to nursing would be a way to improve the conditions for those in hospital.

The ideal is a safe and satisfactory discharge of course but often there are many contributing factors that lead to a more thorough plan being made for discharge than some patients who are able to make those decisions themselves entirely. The lack of placements and decent intermediate care will also always be a factor in delaying discharges from hospital wards.

Delirium and Dementia

The Telegraph publishes an article today relating to some research carried out in the US which links an initial episode of delirium at the beginning stages of Alzheimer’s with a more speedy development of the incidence of dementia.

“The cognitive rate of decline was found to be three times more rapid among those Alzheimer’s patients who had had an episode of delirium than among those who did not have such a setback,” according to lead author Dr Tamara Fong a neurologist at Beth Israel Deaconess Medical Center, part of Harvard Medical School.

“In other words, the amount of decline you might expect to see in an Alzheimer’s patient over the course of 18 months would be accelerated to 12 months following an episode of delirium.”

Not being a medic, I’m sure the importance greater than my initial understanding of it especially if, as stated

“…up to 40 per cent of delirium episodes can be prevented, taking steps to avoid delirium could result in significant improvements,” said Dr Fong.

The article suggests that more focus on the prevention of deliriums would have an impact on the eventual progression of the Alzheimer’s in the same patients.

Hopefully, with all research, it leads to a greater understanding of the disease and it’s progression which is always positive.

The full paper published in Neurology journal.