Dr Mary Pat Sullivan and colleagues examine key research findings on dementia
Digest of the digest
● Social work and social care practice should draw on person-centred and recovery models, which acknowledges dementia sufferers’ life experiences, personal strengths and resources.
● Effective strategies to develop and sustain hopefulness in older people with dementia are needed to promote well-being and quality of life.
● There is a critical need to raise the profile of older people with high support needs in order to ensure that they do not remain on the margins of the policy, service and practice agenda.
● Carer support needs to be improved.
The projected number of people who will be affected by dementia in the future and the anticipated costs of care have led to a greater emphasis on developing a matrix of local services to support people through each stage of dementia. The need to develop a knowledgeable and skilled social care workforce for people with dementia and for their carers is addressed in Common Core Principles for Supporting People with Dementia, by Skills for Care and the Department of Health (2011).
A number of critical factors prevent older people with high-level support needs from participating in decision-making (Blood). Older people often have low expectations in terms of their capabilities and aspirations. There is also too much focus on the needs of organisations to manage resources at the expense of appropriate assessment, intervention and planned support. Blood’s study found that better and more creative communication strategies are needed, as well as a collective voice for older people with high support needs. There is an urgent need to improve formal responses to this group of people at all levels.
When it comes to early intervention, two distinct approaches can help: mental health recovery and person-centred dementia care (Irving et al). The authors locate these approaches in the context of the movements for rights and user participation, consumerism and community. Both mental health recovery – which aims to empower individuals as partners in their own care – and person-centred care share principles such as the importance of valuing people’s individuality and the recognition of the damage stigma and discrimination cause.
Wolverson found that older people with dementia often experience a tension between holding beliefs that foster hope and their real world experiences, which undermine hope. The study carried out interviews with older people with early stage dementia to explore their experiences of hope. The interviewees perceived hope as “integral to living and an important ingredient in maintaining well-being and quality of life”.
Ray argues that the context of long-term marriage and the effects this has on dementia care must also be taken into account. The current, risk-oriented system and the relentless push for efficiency has meant a lack of skilled social work input to assessing a couple’s relationship and the role and nature of caregiving within it. Drawing on research that explores the impact of chronic illness and disability on long-established marriages, this paper makes the case for social workers to take this into account when conducting an assessment of need.
In a climate of resource constraint, willingness on the part of a frail older carer to continue caring may hide a more complex and fluctuating reality. Good quality assessment and support for couples demand the skills, knowledge and values of gerontological social work, including: recognition that caring takes place in the context of embedded marital patterns and roles, knowledge about late-life conditions such as dementia, and understanding about the demands and stresses inherent in dementia care.
Interventions into informal care have small, but meaningful, short-term effects on reducing carer burden and depression (Pinquart et al). There is an ongoing need to improve the quality of interventions, including those that are more intensive and require active participation. The researchers recommend improved carer assessments to ensure interventions appropriately target identified needs.
● Irving K, and Lakeman R (2010) Reconciling mental health recovery with screening and early intervention in dementia care. International Journal of Mental Health Nursing, 19 (6), 402-408.
● Wolverson E, Clarke C and Moniz-Cook E (2010) Remaining hopeful in early-stage dementia. Aging and Mental Health, 14(4), 450-460.
● Blood I (2010) Older people with high support needs: How we can empower them to enjoy a better life. York: Joseph Rowntree Foundation.
● Ray, M (2006) Informal care in the context of long-term marriage: the challenge to practice, Practice: Social Work in Action, 18(2), 129-142
● Pinquart M and Sörensen S (2006) Helping caregivers of persons with dementia: which interventions work and how large are their effects? International Psychogeriatrics, 18(4), 577-595.
About the authors: Dr Mary Pat Sullivan, Christian Beech, Dr Alisoun Milne, Dr Mo Ray, Dr Sally Richards and Dr Denise Tanner are qualified social workers and members of a national network of gerontological social work academics and researchers
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