OPINION

'Nurses play a huge role in improving the quality of dementia care, but they need more support'

17 February, 2011

Baroness Greengross is on the look out for best practice ideas for people with dementia, can you help?

Dementia is a huge challenge to our NHS particularly now when the system must simultaneously make savings and grapple with the biggest shake-up in its history.

We know people with dementia occupy one quarter of hospital beds any one time, and are also frequent users of primary care services, but they continue to be let down, often ending up in the wrong place in the system with poor quality care. All of this means a significant amount of the money spent on dementia is wasted.

For this reason the All-Party Parliamentary Group (APPG) on dementia is leading an inquiry into improving outcomes for people with dementia and saving money. We are calling on nurses and other health and social care practitioners, people with dementia and carers, and leading organisations to submit evidence and contribute to this work. Best practice examples will then be shared and hopefully used across the UK, enabling the NHS, local authorities and others to deliver the best care at the right price.

Existing evidence shows that nurses play a huge role in improving the quality of care people with dementia receive, but they need more support, training and recognition for the difficult job they do. Alzheimer’s Society’s 2009 report ‘Counting the Cost’ found that 97% of nurses in hospitals work with people with dementia, though 84% said they were not given any or enough dementia training. The report found that nurses want to be empowered, with nine out of ten wanting more specialist advice and help to deliver good quality care.

“We want to hear about activities or support that enables people with dementia to live independently”

Besides training, an example of a recent low-cost initiative to improve patient experience and quality of care is called ‘This is me.’ It is a leaflet, jointly developed by Alzheimer’s Society and the RCN, which can be filled out and given to staff when a person with dementia enters hospital. The leaflet enables staff to better understand the person with dementia’s history and respond to their individual needs, helping to reduce any feelings of agitation and distress.

Through this inquiry, the APPG on dementia want to gather more practical ideas and examples like these which can potentially deliver cost savings whilst outcomes. We then want to make these ideas accessible to the people who provide and commission services.

We also want to hear about activities or support that enables people with dementia to live independently at home for longer and carers to carry on caring at home, as the right support early on can reduce the chance of the person with dementia having to go into hospital unnecessarily or care homes early.

Please share any ideas you have in this area with us. There are 750 000 people in the UK currently living with dementia. We also know that nearly a third of people over 85 dying with cancer, circulatory or respiratory disease also have dementia. All of this makes clear just how important it is that we act now and not later.

Together we can accelerate the spread of good practice, and highlight how providing good quality care for people with dementia can help deliver against wider goals for the system.

Baroness Greengross is the chair of the All-Party Parliamentary Group on dementia.

How can I submit evidence?

The Alzheimer’s Society provides the secretariat for the APPG on dementia. If you can submit evidence or would like more information about the inquiry, please visit the APPG website.

The deadline for written evidence is 26 February.

Readers' comments (20)

Anonymous | 19-Feb-2011 9:13 pm
I believe more people with dementia would live longer in their own homes if night-time activity could be controlled. My 81 year old aunt, although needed an eye kept on what she was doing in the day, it was manageable, had to go into care because her 84 year old husband was disturbed all night and also that is when she came aggressive. He was exhausted and his own health suffered.
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Anonymous | 19-Feb-2011 10:26 pm
I believe the Naomi Feil Validation Method provides a good care model for people with dementia

specialist training for nurses and healthcare assistants and adequate staffing levels of those with this training is essential

purpose built centres are helpful so that patients have enough space to move around in comfortably without coming to harm or feeling too confined or wandering off

keeping them in touch with familiar surroundings and people where possible, letting them continue with as many of their previous habits and any hobbies as possible is also helpful

adequate education and psychoeducation and support for relatives who may wish to continue looking after them or be involved in their care

ensuring that everybody concerned with their care needs to understand that the need to enter into their world and the difficulties they experience of being orientated in the outside world as the disosrder advances

Nursing the patients in specialised dedicated units where they may continue their previous daily living pattern as much as possible with support from occupational therapists who have specialised training in therapies for individuals with dementia

Creating a positive, cheerful, light and attractive environment with appropriate furnishing as well as entertainment and occupations according to their ability

New extensions added to nursing homes in Switzerland are now required to have a specialised unit for dementia. There was also an interesting report on a new village for dementia patients where they can live as normally and safely as possible with as much support as they need. The very attractive village is completely independent and self contained so that residents can move about safely and with specialist care and as much support as each person needs. It has all its own facilities, including a supermarket and pavement cafés. Unfortunately I have been unable to find any further information on this but I believe this model already exists in the USA.

Recently in Switzerland they are also trying to put individuals together to live in groups in flats with specialist resident staff, including nurses, assistants, social workers and OTs, on a rota basis, where they are able to do tasks such as cooking or laying the table, etc. with supervision.
This model is also being tried for elderly individuals who are reasonably independent who are not ready for a home and who do not wish to live on their own. The also have some level of professional support or supervision.
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Anonymous | 20-Feb-2011 3:12 pm
From the article: 'We also want to hear about activities or support that enables people with dementia to live independently at home for longer and carers to carry on caring at home, as the right support early on can reduce the chance of the person with dementia having to go into hospital unnecessarily or care homes early.'

What 'adequate' help is there for carers? Night-sitters ... too expensive, I expect? I know it is a difficult condition to manage, but I personally don't like the idea of these people being isolated from society in villages. I can see why in a way, but it just creates a modern-type institution that was abandoned years ago.

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Anonymous | 20-Feb-2011 8:26 pm
"What 'adequate' help is there for carers? Night-sitters ... too expensive, I expect? I know it is a difficult condition to manage, but I personally don't like the idea of these people being isolated from society in villages. I can see why in a way, but it just creates a modern-type institution that was abandoned years ago."

I don't have any personal experience of this unfortunately but the one I saw on tv looked excellent with first class facilities just like a five star holiday village where they lived in groups or alone in small cottages, although I expect there were different living models available according to need. the residents appeared to have plenty of support with a very wide range of activities to suit their personal needs. the lady I saw on the programme was accompanied to the supermarket where she was probably able to choose some the things she wanted for herself. The aim and philosophy was to give them as normal and comfortable a life as possible without the feel of an institution. they were free to go around in the safety of the village and with the prof. support and accompanyment as needed and there is nothing more therapeutic than being able to go out and sit in the sun on an attractive café terrace just as one would in a normal village or town but with dementia often no longer able to, and especially with their family and visitors. Visitors were free to come and go as they liked and also shop (supermarket, hairdressing salon, bank, post office, choice of cafés, etc) there and use the facilities

If I needed that type of care I would like to live like that. I have no idea of the financial side of the care and the costs as eveything in Switzerland is paid for by those needing care. I just wish I could find the info. again as I have no idea where it is located or any more about it although I have searched high and low on the Internet using various search terms but without success.

It was new, purpose built and very attractive and also set in an attractive location.

If I find out anymore I will post it.
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Anonymous | 21-Feb-2011 1:01 am
I still haven't found the answer for people with dementia staying at home with carers. These facilities seem to concentrate on single or widowed people
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Anonymous | 21-Feb-2011 11:45 am
Anonymous | 20-Feb-2011 8:26 pm

There is noting in my post which indicates that the village is for single and widowded individuals. The Swiss usually admit couples and even families or someone with a carer to their facilities as well.
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Anonymous | 21-Feb-2011 1:03 pm
Anonymous | 21-Feb-2011 11:45 am

It didn't appear that clear that couples/families were admitted, but no matter.

As a carer of a parent, partner or spouse with dementia, I couldn't bear the thought of living in a 'dementia' village (excuse that expression, it leaves me cold too). We need more information to know how these institutions support the carer/families, especially at night and promote a 'normal' life for them. I don't see these places being the answer, but I will admit I don't know what is. The scarey thing too is what other 'villages' will be developed in the future for other conditions. I fear these people and their carers/families are removed from society and forgotten.
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Anonymous | 21-Feb-2011 8:12 pm
If anyone thinks that more services exist to support people with dementia in their own home if they live alone, you are sadly mistaken. I helped care for my nan who lived alone and the maximum care of 4 visits in a 24 hour period was inadequate to say the least. I am concerned that staying at home is not the best course of action for many people with dementia. Their needs are so complex that specialist care may be the best thing for them and their carers. The issue is that 'specialist' care is not easy to find and that many care homes registered to take residents with dementia, are ill equipped and have staff with no or little understandning of the disease. Why is it always assumed that staying at home is best? I suggest that people who think that, have little or no experience of caring for someone with dementia.
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Anonymous | 21-Feb-2011 9:01 pm
Anonymous | 21-Feb-2011 8:12 pm

"I suggest that people who think that, have little or no experience of caring for someone with dementia."

I find this comment inappropriate, ignorant and insulting to the many people who do successfully care for people with dementia in their own homes which is often the very best environment that a person can be offered as to opposed to an institution. Think of yourself in a similar situation!

There are many different types of dementia and these disorders go through many stages and each individual case and their needs and personal circumstances as well as those of the carer are different and cannot be generalised.

The purpose of the comments here is to debate in a constructive and positive way to share ideas and seek the most effective and innovative ways of giving this group of individuals and their carers the best possible quality of life and is not merely a platform for making offensive comments about those whose experience you know nothing.

There is plenty in the media at the moment about poor attitudes such as you express above and bad attitudes go hand in hand with bad standards of care!
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Anonymous | 21-Feb-2011 9:23 pm
the admirable carers looking after people with dementia at home need support and encouragement not totally and unhelpful negative and destructive criticism as above!
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Anonymous | 21-Feb-2011 10:27 pm
Anonymous | 21-Feb-2011 8:12 pm

Sorry to hear of your struggle with your Nan, being at home wasn't providing the level of care she required and it must have been a traumatic time for her and yourself. However, I don't think the debate is between which is best, being at home or in care, but finding the right level of care for each individual in the right place at the right time. I agree with you that specialist care is hard to find at home, in hospital or in care. There is a long way to go and a lot of education to be done. Sadly, it is the same for most long term conditions, not just dementia.
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Anonymous | 21-Feb-2011 10:39 pm
added to above, I am not having a go at carers, they do an admirable job, but it is the system that lacks the support they need. I hope the Dementia Strategy supports specialised care. If it is anything like the Stroke Strategy, it will be caught up in commissioning services...in a nutshell, finance.
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sara waters | 23-Feb-2011 7:56 pm
I feel I should clarify my earlier post. When I stated that perhaps staying at home is not the answer I feel I am adding to the debate. The many wonderful people who care foe dementia sufferers at home are usually the persons loved ones. Support is hard to find and often needs to be paid for. Assuming that home is best is not treatning everyone as an individual and not taking inot account the people who suffer with dementia who live alone. It is not a bad attitude to acknowledge this.
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Anonymous | 23-Feb-2011 8:20 pm
I agree that this is not merely a 'platform for making offensive comments' yet find that in itself an offensive thing to say. It is clear that dementia evokes emotional responsives to which we should be sensitive. Lets remember these are comments and everyone deserves a viewpoint. More day centres are needed and training of staff is paramount.
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Anonymous | 24-Feb-2011 1:00 am
I believe the comments are not particularly negative, but an expression of our experiences, be it professional or personal. As with most experiences they can be a mixture of both. With the survival rate of the elderly increasing, and not let's forget that includes us, we want the best for our family, our relatives and indeed ourselves. As a 'baby boomer' it is scarey. Having said that, lest not forget, many elderly manage to live independently for most, if not all of their lives, even with complex conditions.
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Anonymous | 24-Feb-2011 11:40 am
Initially I was only for intellectual debate and on other comments pages became rather impatient at having to weed through all the rest to follow the thread relating to the article. It is true however that where nursing care is concerned, and with a subject such as care of the elderly and dementia which will affect most at some time in their lives either directly or indirectly, we need to listen to the feelings, opinions, experiences and suggestions of others in order to get a full and enriched picture which should play a useful role in helping to find a rapid solution to the problems. Many of us a are to keen on protecting ourselves in our own little microcosms until we are confronted with the reality when it is often too late to cope adequately and alone. Care of the elderly is everybody's responsibility including the young who have, or will have in the future, elderly relatives.
I think these comments are useful in that they give time to reflect on the article and other comments and consider further points of view and encourage us to express our own thoughts on the issue but this needs to be taken further and brought to the attention of those in a position to influence further action and change.
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Anonymous | 24-Feb-2011 10:16 pm
Useful links and information:

http://www.dhcarenetworks.org.uk/_library/Resources/Housing/Support_materials/Newsletter/Newsletter45_Feb2011.pdf and there are more links within this document

Housing LIN tel: 020 7820 8077 www.dhcarenetworks.org.uk/housing email: info@housinglin.org.uk
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Anonymous | 28-Feb-2011 10:15 am
The care that people with dementia get in hospital and in some residential facilities is seriously stuck in the past. A local residential unit recently revolutionised their care by having the clients make their own beds, fetch their own breakfast, tidy their own laundry away etc. These clients were busy until nearly lunchtime when they had to lay the tables and help with the lunch etc. The result a high percentage were taken off their psychotrophic drugs within 6 months of admission, the nightime activity was reduced significantly and all round happier residents and staff. I will encourage the manager to contribute her good practice to this study. She, like me, completed the post-graduate certificate in dementia studies through Stirling University. However, caution, study can point us in the right direction but you need the agreement of whole units. Nurses in busy acute wards have neither the will, nor the time to ensure people with dementia are cared for adequately. Too often I have heard of nurses who create work for themselves by not applying appropriate strategies to support people with dementia. Preferring to rely on out dated views that they need to be drugged up in order to control their behaviour. No easy solutions here.
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Anonymous | 28-Feb-2011 12:03 pm
What an excellent and intelligent outlook above. All nurses caring for a large group of patients with dementia should do this course. but there should be one standardised course for all throughout the nhs, and open to those in the private sector, to prevent all the patchy care across the country which currently exists.

The idea of occupations and keeping people active is also effective as long as the individuals are willing and are not being exploited to reduce work for the staff or to save costs. Such activities need to be properly supervised by dementia trained nurses and occupational and psychotherapists, or other appropriate professionals so that there are social-learning and life-enhancing benefits for the patients.
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Janice Chalmers | 12-May-2011 6:34 pm
I have looked after people with dementia in three countries and the issues are the same wherever.
I did find that in Australia they had some good initiatives and I was a case manager for the extended care at home for people with dementia. (EACH-D) It allocates money to the care of that person which is manged by the case manager in collaboration with the client and family. I would source and allocate resources that were required
I believe that a large part of this issue is around the fact that care options are not discussed early in the disease process. It may be easier for carers to make decisions and for those decisions to be less stressful if they knew what the person wanted to happen.
Home is not the best for everyone but choice is and many people I have met dont want family to care for them and would prefer to be in nursing homes -others want home and family at all cost
If we are the next generation to fall prey to this disease isnt that what we would want?
Of course our care also needs to be excellent whether at home or in care
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