Another sign that if you spend money on research you will get results and older people and their diseases have not had high enough priority

Hope for Alzheimer's treatment as researchers find licensed drugs halt brain degeneration http://gu.com/p/4a9c5

American official website summarises research on effective interventions with older people with disabilities

http://www.acl.gov/Programs/CDAP/OPE/ADEPP.aspx

And here's why dementia prevention and treatment hopes might not be fulfilled - it's not a big funding priority

Dementia research gets 13 times less funding than cancer, figures show http://news360.com/article/287605493

Life story work and care mapping for people with dementia: creative work is human, form-filling is not

I looked at the projects approved for funding by the government’s dementia research programme. Most of the things are about stepwise improvement in how various bits of the NHS manage dementia care.

Link to the government's list of projects they are funding here. They are many (21) and various.

I picked out two that interested me. One is about the use of life story work; this is a technique for getting people to look at the different stages of their life and producing a written account, or increasingly video and other kinds of product. I imagine that they are interested in it because it might improve or use the memory of the person whose dementia is worsening. But what I think is much more important about these sorts of techniques is that way it encourages people to work on projects, and be creative in what they are doing., So much health and social care focuses on managing a care setting, and keeping people alive in what are fundamentally boring environments. Creative activity is a really important way of combating this.

The other thing I think is important about this is that it is a form of activity which involves the person with dementia taking part in human interaction with the person working on their life story with them; so much conversation in care settings is humdrum management stuff rather than personal, it also involves the person with dementia leading the conversation with their life story, rather than answering questions that are mainly of interest to the professional.

I also picked out the project on something called dementia care mapping. The starting point for doing this study is that people with dementia in care settings become agitated or difficult in ways that the staff can’t cope with. As a result, such people with dementia are more like to be admitted to hospital, and given anti-psychotic drugs to cool them out, making them easier to manage. This is worrying in itself: years ago, social work developed a professional policy that it was neither useful nor ethical to cool people out; better to understand and work with their difficult behaviour. I wish other professions thought the same way.

But I would have wished that they’d come up with something better to research than another ‘tool’. You may be misled by the word ‘tool’ into thinking that this will be some concrete and practical way of helping people in this position, but tools in the care world are usually forms for staff to fill in. I’m always very interested in the interpersonal content of the conversation when forms are being filled in, and then what is done with them. Forms being filled in is often done in a routinised way by staff who don’t really understand what they are about, and then don’t know how to use them.

The project information says this is about staff development: but how are they going to help staff develop using the material they are working with? The education process that results is far more important than getting them to fill in the form. I’ll wait for the research results before believing this is going to be widely useful. I suspect it may turn out to seem wonderful to the people who are piloting it and have research money spent on helping them to develop their understanding. For the people who follow on after it is declared a success, I suspect it’s going to be just another form to fill in. 

These are the accounts of the projects in the Department of Health's list:

HS&DR 11/2000/11 Improving care for people with dementia: development and initial feasibility study for evaluation of Life Story work in dementia care.

People with dementia sometimes need help to communicate their histories and identities. This study will investigate how 'Life Story work' can help people living with dementia to do this, and whether this work can enable services to more effectively meet their needs. It will do this by speaking to people with dementia, their carers, and health care professionals about their experiences of Life Story work, and identifying areas of good practice.

HTA 11/15/13 Evaluating the effectiveness and cost effectiveness of Dementia Care Mapping (DCM) to enable person-centred Care for people with dementia and their carers: A UK cluster randomised controlled trial in care homes (DCM EPIC trial).

At least two-thirds of people living in care homes have dementia and many become agitated or show other behaviours staff find challenging.

These behaviours are often linked to poor quality care and people with these behaviours are more likely to be admitted to hospital and are often prescribed antipsychotic drugs, which can cause harmful side effects. This study will involve 750 people with dementia and care staff in 50 care homes. 30 care homes will be randomly allocated to have staff trained to use Dementia Care Mapping; a practice development tool and process. The success of Dementia Care Mapping will be measured according to changes in behaviours staff find challenging, resident quality of life, the drugs residents are prescribed, the number of NHS services needed for residents, changes in the numbers and types of negative events residents experience (for example admission to hospital, falls), how staff feel about their job and staff resignations and sickness.

Govt bereavement research fails to consider older people because social security is no longer social

The government is going through a consultation about bereavement benefits at the moment (you have to reply by the 5th March): here is the document on the web: Government consultation on bereavement benefit.

They have also published some research which, from the point of greying people, is a bit disappointing. The crucial cut-off date is age 45, because the state bereavement allowance is only paid for a year if you are bereaved from that age up to state pension age (unless you have children when you are bereaved, in which case you you get an extra allowance while you are getting child benefit for them).

The research can be downloaded from here: DWP bereavement research site
and the pdf here: Qualitative study of the effects of bereavement benefits
and a more detailed summary and comment on my Social Care/Palliative Care blog: Blog post on bereavement benefit research

All of this is being done by the Department of Work and Pensions, the fiefdom of Secretary of State Iain Duncan Smith, although obviously bereavement is so unimportant it's actually being handled by their House of Lords Minister, Lord Freud. I'm not a fan of the way the DWP is organised, because its main focus is on reducing the financial cost of social security, rather than examining the state's social responsibility for our citizens. At least when it was the Department of Health and Social Security, it was tied up with a secretary of state who had responsibility for social and health care, and who therefore had to look at the broader social and health consequences of of what it was doing with social security. The current DWP is mainly concerned with social security in relation to work.

The consequence of this limited perspective is in general that older people are seen as an expense because they don't work (and therefore don't pay taxes and cost the state money) and, in this instance, you can see it in the atttitude to bereavement benefits, which are mainly about helping young people to cope with the practical consequences of a sudden reduction in income and increase in expenses. This research, unnecessarily it seems to me, spends some time looking at whether bereavement benefits are a disincentive to work (and finds that they are not), whether they are too much (no, although useful in coping with the financial consequences of bereavement, they're too little) and how you can help people make a transition to work.

The researchers find, for example, that the emotional consequences of a bereavement are sometimes a factor in being able to manage on a suddenly depleted income and that inflexible employers make it more difficult for people to stay at work if they're caring for a dying partner or coping with bereavement. Moreover, the short-term contract culture, in which the economy tries to make as many employees as possible temporary, makes it much more dificult for people to stay in work and cope with bereavement and to get back to work when they are bereaved.

So, here is a little bit of information that inflexible and cheapskate employment arrangements are adding to the distress of bereavement and making it more difficult for people to care for sick partners and cope with their bereavement. Are there any suggestions for dealing with (or researching further into) these broader social issues? No, because the DWP doesn't have broad social concerns, its job is only to explore (and under the present government in its present economic situation if possible reduce) benefits payments.

And because it is thinking about those benefits only in relation ot people of working age, it is not looking at the possibility that older bereaved people, retired and without children, might also need financial help to deal with some of the emotional and practical consequences of bereavement. In passing, the researchers note people appreciated it when the state gives them a regular payment to help them through a difficult patch in their lives. They also note that some people resented the fact that the benefits are short-term and related to bereavement and child care: they do not provide official recognition of the important social role of being widowed, as the old widows pension used to.

This is a good example of how the state recognising and helping with the troubled times in people's lives is a possibly intangible but very worthwhile role of government  action. Social security is not only about bits of money, important though that is when you're on the edge financially, but it is social: it shows in a very clear way that the people around you recognise and maintain their solidarity and connection with us in our shared social life and experience. I can't help feeling that politicians,civil servants and economists recognising that support and conection with citizens is a very important function of government might make them all a bit more popular and well-thought-of.