By Imogen Blood
There is a growing number of diverse groups of older people with high support needs. Improvements in life expectancy mean that people aged 85 and over are the fastest growing age group in the population. The author looks at the different groups and the form of support they need. It was written as part of the JRF programme A Better Life.
Viewed from a social model of disability, an older person who is physically frail, has a chronic condition or multiple impairments, could have low support needs if they live in accessible housing with enabling technology, within a supportive community.
A complex combination of medical, social and personal circumstances therefore triggers the point at which we might need support; whether or not these needs are assessed will be shaped by our access to information, referral or signposting. How much support we are at this point deemed to need is then further shaped by budgets, eligibility criteria and, in the case of older people, ageist assumptions.
It looks likely that the average years spent with a disability and/or in poor health will continue to increase alongside, or even faster than, life expectancy. As the group of the ‘oldest old’ grows, it is quite likely that the proportion of that group who have high support needs will also increase.
A changing group
This diverse group is not only increasing in size; it is also changing in profile. As the gender gap in life expectancy narrows, we can expect the proportion of men in the oldest age groups to increase. As the cohort of BME people who migrated to the UK from the Caribbean and the Indian sub-continent in the 1950s and 1960s reach the oldest age groups, the UK’s BME older population is predicted to increase dramatically over
the next couple of decades.
There has been a significant increase in the numbers of older people living alone (CPC, 2010), with women and LGB people more likely to fall into this category (Blood, 2010).
410, 000 older people were estimated to be living in care (residential or nursing) homes in the UK in 2004, though there are significant gaps in what we know about their key characteristics, such as ethnicity. We can, however, be confident that most of this group will meet the JRF definition of older people with high support needs: most are over 85, three-quarters have a ‘severe disability’ and 64 per cent have a form of dementia (Blood, 2010).
The emerging evidence base
There is relatively little evidence that captures what older people with high support needs want and value. Where their views have been sought (e.g. Bowers, 2009; Katz, forthcoming) or where broader discussions have taken place with carers, younger disabled people and older people with a range of support needs (e.g. Branfield, 2010; Burke, 2010; Cattan, 2010), a number of themes emerge about what makes for a ‘better life’. These include:
• continuity, personal identity and self esteem;
• meaningful relationships;
• personalised and respectful support;
• autonomy, control and involvement in decision making;
• a positive living environment: security, access, privacy and choice;
• meaningful daily and community life: making a contribution, enjoying simple pleasures; and
• good accessible information to optimise health and quality of life.
Challenges and approaches
In this section, we explore key themes which have emerged from the recent JRF reviews and research: affordability; navigating the system; dementia and mental capacity; communal tensions; social isolation; recruiting and retaining a skilled workforce; involving and supporting carers; and care, communication and choice at end-of-life.
We briefly consider the key issues and evidence under each theme in relation to older people with high support needs and consider the challenges and promising approaches within different settings i.e. care homes, housing with care and in the community.
The means-testing of state financial support for social care (outside of Scotland) hits those who are just above the thresholds for free or partially-funded care the hardest. Those with the highest support needs will have the most expensive care bills so there is a ‘double whammy’ for middle income members of this group, including many homeowners who may be ‘asset rich but cash poor’ (Keen & Bell 2009). 41 per cent of all care home residents are paying for all their care and this group also misses out on assessment and review by social services (Burke, 2010).
Navigating the system
Good information, advice and advocacy to help older people, their carers, families and professionals navigate the complex benefits, housing and care systems is vital. Without this, older people (especially those for whom language, literacy, or cognitive/ sensory impairments present an additional barrier) do not receive the benefits to which they are entitled and may not be aware of (Cattan, 2010; Blood, 2010; King 2010).
Dementia and mental capacity
People with dementia make up 64 per cent of older people living in care homes (Blood, 2010) and a quarter of those living in housing with care schemes (Percival, 2010). In the community, we know that there can be barriers to the diagnosis, treatment and care of
dementia and that these may affect BME older people even more acutely. Increasing numbers of older people with dementia will also have other disabilities or health conditions. King (2010) highlights the high incidence of early onset dementia for those with learning disabilities and Blood (2010) describes current research into dementia and the deaf community.
Maintaining good social relationships, whether with peers, workers, family, friends or the wider community, is key to quality of life for older people (Percival, 2010; Bowers, 2009). Yet isolation and loneliness are problems shared by many older people with high support needs (Manthorp, 2010; Cattan, 2010). Being in a communal setting does not, in itself, protect older people from social isolation. Those with mobility, cognitive and/or sensory impairments are at particular risk of being excluded from the social life of housing with care schemes (Callaghan, 2009).
Involving and supporting carers
Approximately 12 per cent of the adult population provides care to a partner, adult family member or friend and a fifth of this group provides 50 or more hours of care a week. 70 per cent of those receiving informal care are over 65 (Carers UK, 2009).
We know that there are much higher rates of caring for older relatives with high support needs by women and/or people from Bangladeshi and Pakistani backgrounds. We also know that there is a significant group of older people providing care (typically for partners) who may themselves fit the definition of having ‘high support needs’ (Blood, 2010). As JRF (2010) points out in its response to the Law Commission’s consultation, ‘users’ and ‘carers’ cannot always be clearly distinguished from each other.
Voice choice and control
Involving users in commissioning local services is a recurring mantra in adult social care but, as Scherer (2010) suggests, there is not always clarity around in what this might mean in practice. As Bowers (2009) argues, there is a long way to go to ensure voice, choice and control in even personal day-to-day decision-making, let alone the meaningful involvement of older people with high support needs at a more strategic level in the development of services. Part of the problem is that members of this group get few opportunities to come together and develop a shared voice (Branfield, 2010).
Personalisation seems to be the continuing direction of travel within social care. Although there are significant barriers to Direct Payments for older people with high support needs, personalisation in its broadest sense is about building voice, choice and control into how services are run and should, as such, be welcomed. Co-operatives UK (2010) report on a series of selfmanaged care pilots for older people in which a mutual organisation acts as employer and provides training, quality standards, insurance and administration without reducing the individual’s direct control of their care. This kind of model could work particularly well for groups of LGB or BME older people, who could use this approach to choose and control services that are safe, accepting and culturally or socially appropriate.
Opportunities for older and younger people to live, socialise and volunteer together are one way of challenging ageist stereotypes and breaking down barriers between ‘them’ and ‘us’. In Paris, Ensemble2Generations carefully matches students with older people who can offer cheap accommodation in their homes in return for low-level practical assistance and companionship. In their promotional DVD, a music student is placed with a retired music teacher: they play music together, he walks her dog and gives her computer lessons and draws on her knowledge and library of music to boost his studies.
What will happen next?
By the end of 2010, JRF will have commissioned new research: a) to understand the potential for approaches based on mutuality and reciprocity; b) to address issues in housing with care that particularly affect older people with high support needs (affordability and choices; relationships; boundaries of responsibility). In 2011, we will publish a key report from a project on Older People with High Support Needs: Their Aspirations for a Better Life (Katz et al, forthcoming). This project will build on existing knowledge and directly involve older (and some younger) people with high support needs in identifying and validating what people want and value from life. The report will frame the rest of the programme. JRF will continue its partnership with My Home Life (City University and Age UK) to improve life for people living and working in care homes across the UK, including homes run by the Joseph Rowntree Housing Trust. We will seek to contribute to better policy, practice and understanding about how older people with high support needs – now and in the future – might have a better life.
About this Round-up
This Round-up was written by Imogen Blood, a freelance consultant working across the public and not for-profit sectors to improve effectiveness and promote equality, and was commissioned as part of the JRF programme A Better Life.
The full report is available at http://www.jrf.org.uk/sites/files/jrf/supporting-older-people-summary.pdf
Imogen’s background is in social work, research and evaluation, and equality and
diversity training and consultancy. She is an associate of the International Longevity Centre (ILC-UK) and a consultant partner at Equality.