The Joseph Rowntree Foundation offers a stern critique of current services and a blueprint for how older people can enjoy a better life, as Melanie Henwood found
Title: Older People’s Vision for Long Term Care
Authors: Helen Bowers, Angela Clark, Gilly Crosby, Lorna Easterbrook, Alison Macadam, Rosemary MacDonald, Ann Macfarlane, Mairi Maclean, Meena Patel, Dorothy Runnicles, Tim Oshinaike and Cathy Smith
Institutions: Joseph Rowntree Foundation, Centre for Policy on Ageing, National Development Team for Inclusion
As part of the independent living programme of work at the Joseph Rowntree Foundation (JRF) this study was undertaken to examine the experiences and aspirations of older people living in residential and nursing homes. The study describes good practice to build a positive vision of a good life for older people with high support needs.
The research team involved in this study brought together researchers and older people in order to allow “very different conversations to be held covering a range of experiences and support needs”. Specifically, the project had three aims:
● To explore the current and potential role of long-term care.
● To learn from the experiences and aspirations of older people who live in care homes or very supported accommodation.
● To pay attention to older people’s experiences of having a voice, making choices and being in control of their lives.
Published late in 2009, this is a very timely piece of work. While long-term care is an issue that attracts considerable attention, almost all of the commentary has been concerned with how to pay for care, both now and in the future. By contrast, very little debate takes place either on the nature of long-term care, or how it fits with wider objectives of independent living. This report addresses these dimensions.
The government recently announced the establishment of a Commission on Long Term Care to make recommendations on “how to achieve an affordable and sustainable funding system for care and support, for all adults in England, both in the home and other settings.”
Importantly, the terms of reference also recognise that the work of the commission should support reform of the whole system, and “be compatible with the government’s vision for care and support – supporting personalisation, prevention and partnership and offering protection for people”. Among the many reports that the commission needs to take account of in its work is this report from JRF.
In exploring the role of residential care and how it fits with current policy models of independent living the study also revealed that older people’s voices “are subdued, or represented or illustrated through other people’s experiences and perspectives (carers, care workers, families, professionals). Very little comes directly from older people themselves.” This is a stark and worrying conclusion.
The report provides a clear analysis and reminder of the tacit and embedded nature of ageism and discriminatory practices. This is of critical importance in relation to the personalisation agenda and independent living; too often older people have not been supported to participate as others might do and “they continue to be perceived as passive recipients of care first and foremost.”
If the voices of older people “are so quiet as to be practically absent from discussions about their requirements and importantly their preferences and priorities”, this report provides a platform for at least some of those voices to be heard.
Few older people actively plan to be in a care home; typically they find themselves living in one because of a crisis in their health, or because somebody else persuaded them it would be a good idea. More than 20 years since the Wagner report expressed the wish that residential care should be “a positive choice”, all too often the reality is that it is still the choice of last resort and one that barely involves the older person as can be seen from these quotes: “I came here eight years ago. My sight was deteriorating, bad arthritis, wasn’t coping – my social worker bullied me into coming.”
“A fall while in hospital led to my GP deciding I should not return to live alone in my house.”
Not only can older people be marginalised from the crucial decision to move into a care home, but once they have done so the issues of voice, choice and control are frequently missing “at all levels for older people with high support needs”.
For people who have lost control (or feel they have had this taken from them) of the big decisions about where and how they live, some control over other domains could be hugely valuable, as one resident remarked: “It would be great if we could use some of the fee we pay for our own leisure, maybe have someone for two hours each week to do what we want with us – take me out on the bus, sort out my wardrobe.”
For others, the aspiration was simply to be treated as a person: “I would like the care assistants to talk to me when they come to care for me.”
There is much in this report that is depressingly familiar. Despite the emphasis in recent years on developing personalisation and supporting independent living, for older people with high level support needs, the reality is often quite different.
Of course, this is not the universal experience and the study found some examples of good practice, but these “are so few in number, limited in their scope and of such variable quality that we believe that they miss the essence of independent living and are unlikely to bring about widespread change on their own”.
The study does not simply offer a critique of the life on offer for many older people in care homes. It identifies what a good life should look like, and the steps that are needed to deliver it. The fieldwork findings, feedback and discussions all allowed the distillation of the Keys to a Good Life Framework. Adopting this framework would involve a significant move towards thinking explicitly about what older people would like and what would help them achieve it.
Six keys to a good life are identified in terms of:
● Personal identify and self-esteem
● Meaningful relationships
● Personal control and autonomy
● Home and personal surroundings
● Meaningful daily and community life
● Personalised support and care
For each of these domains, changes are needed at different levels.
At an individual level, human rights need to be better understood and applied. So many of the shortcomings of current care derive from the failings to approach people as individuals with a right to express their needs and preferences.
At a local level commissioners and providers need to engage directly with older people with high support needs and involve them in decision making.
Changes at national or societal level are probably the most demanding because they necessitate a “fundamental shift…away from a ‘professional gift model’ to a citizenship model.”
The Commission on Long Term Care would be well advised to revisit its terms of reference and ensure that its remit goes beyond the funding of care and support to address these fundamental issues of securing a good life.
As the authors comment: “This is a completely different approach to the current debate within government and across the sector about the future role and funding of long-term care where discussions are not only dominated about who pays for what, but shaped by questions that explicitly lead people to have that discussion rather than a broader debate about what needs funding in the first place.”
It is now time for that broader debate to begin; and this study from JRF provides an excellent starting point in enabling that to happen.
Multiple areas of change
The report identifies multiple areas in which changes are required at individual, local and national levels against each of the keys to a good life. Some of these are highlighted below, particularly emphasising the personal dimensions.
The central underpinning key to a good life. Being able to express what is important, and being heard, understood and valued.
Being able to choose who is in your life and maintaining close and important relationships, as well as being supported to develop new relationships and friendships.
Having control over personal decisions – both the large ones about where you live, who you live with and how you live, as well as the smaller day to day ones which help you have control of your life.
Having choice and control over the immediate physical environment and over personal and private space. Having a say in the type and range of communal spaces to meet with family and friends.
Feeling valued and belonging. Having a purpose and a role and being able to contribute to community and civic life.
Having choice and control over the support you need and who supports you.
This article is published in the 12 August issue of Community Care magazine under the heading The good life for older people