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Parallel Session P1 - Innovative care services and approaches (1)

Detailed Programme and abstracts

Friday, 1 October: 11.00-12.00 (Red Room)

P1.1. Post-diagnostic pilot project

Tracy Gilmour, Post Diagnostic Practice Manager, Alzheimer Scotland, United Kingdom

The presentation will describe the work of the two year innovative post-diagnostic pilot, funded by the Scottish Government. Dementia is a priority for the Scottish Government, which has recently published a National Dementia Strategy. The presentation will focus on the aims of the project, intended outcomes and report on work of first 18 months of project.

Working with East Renfrewshire Community Health & Care Partnership and with Renfrewshire Council and Renfrewshire Community Health Partnership, the project is helping to bring the personalisation agenda into the field of dementia and aims to raise awareness of the benefits of individualised budgets and direct payments for people with dementia, enabling people with dementia to design and tailor support that meets their needs.

The project aims to help people with dementia to become active participants in their own care and to be supported to maintain or recover control in their lives as much as possible at each stage of the illness. By providing support following diagnosis while the person with dementia has the capacity to make decisions and plan ahead the project aims to help people stay connected in their communities, living as full a life as possible and to be able to plan ahead for their future needs.

The project provides information, advice, signposting, emotional and practical support to help the person with dementia and their families/supporters to help them to understand and come to terms with living with dementia. The project assists people with dementia and their families/supporters to put in place financial and legal arrangements to maximise their control over future decisions made on their behalf (e.g. power of attorney, advance statements). Using person centred planning tools, staff can assist people with dementia to realise their aspirations and fears, and to plan ahead for their future needs, discuss options for future care and set out their wishes for the future. The project aims to help people to think creatively about the support they might require and to make use of ‘natural supports’ including support from family, friends and community.

An independent evaluation of the project is being carried out by the Dementia Services Development Centre. The evaluation aims to identify what difference, if any, the post diagnostic support service makes for people with dementia and their carers in terms of their lives with dementia over a period of one year from diagnosis. The main areas that the evaluation will focus on are quality of life, service access, independence and choice. An evaluation report will be produced for the Scottish Government and paper(s) submitted for publication in journal(s).

P1.2. Sight loss and dementia: developing effective services

Evers Clive, Alzheimer’s SocietyLondon,

Buchanan Sarah Thomas, Pocklington Trust, London,

The effect of dementia on vision is often not understood by people with dementia, their family or paid carers. At the same time, the effect of eye conditions and ageing of the eye often goes unrecognised among people with dementia because support is focused on the impact of dementia on people’s lives and little attention is paid to other conditions.

The Alzheimer’s Society, RNIB and the Thomas Pocklington Trust are working to raise awareness of sight loss among people with dementia and to encourage policies and practice that address sight loss and make the most of vision.

The aim is to support the development and delivery of services that will provide effective responses to sight loss- whatever its cause- that affects people with dementia and to offer guidance to families. Dementia and sight loss are both more frequent in older age. Dementia is one of the most common and serious disorders of later life affecting 7% of people over 65 (1 in 14).

Some people who have dementia will experience sight loss due to visuo-perceptual changes caused by dementia. Some people with dementia will have concurrent eye conditions (most commonly macular degeneration and cataracts) and normal ageing of the eye. This means that almost everyone aged over 65 will have a degree of sight loss that affects their daily life. Taken together this means that at least 2.5% of people over 75 have both dementia and an eye condition that causes serious sight loss.

Research, practice and the experience of people with dementia emphasise the importance of environmental modifications that make the most of vision.

This presentation will draw on a 2009 consultation event with people who have dementia and are affected by sight loss and their carers, providers and commissioners of dementia services.

Research projects about prevalence, experience and responses to sight loss among people with dementia will be outlined.

Practice experience from the RNIB and Alzheimer’s Society gathered from consultation with dementia services, sensory services and older people’s services and family carers will be presented.

An overview of prevalence will be given and a series of good practice points to support effective services for people with dementia and sight loss will be proposed. The importance of joint working will be stressed in order to support and maintain the roles and activities of people with dementia and sight loss.

P1.3. Developing palliative care in dementia services – An Irish action research project

Marissa Butler1, Dr. Tom Reynolds2, Michele Hardiman3

1 Clare Mental Health Services for Older People, Ennis, , Ireland,

2 Clare Mental Health Services for Older People, Ennis, Ireland,

3Clare Mental Health Services for Older People, Ennis, Ireland,

Introduction: The Irish Hospice Foundation HSE Report of 2008 “Palliative Care for All: Integrating Palliative Care into Disease Management Frameworks” examined the palliative care needs of people with dementia. It found little evidence of delivery of palliative care for people with dementia in Ireland and recommended that palliative care should be integrated into the care pathway of people with dementia in all care settings. In response to this key recommendation in 2010 a two-year action research project began to devise, implement and evaluate appropriate palliative care responses for people with dementia within an Irish health care context. It is based in a residential facility under the auspices of Clare Mental Health Services for Older People, Ireland. This project is jointly funded by the Alzheimer Society of Ireland, the Irish Hospice Foundation and the Baxter Foundation.

Method: Action research methods are effective in closing the theory-practice gap, facilitating collaboration and suited to small-scale projects to effect change locally. This participatory approach can allow health professionals to reflect on practice and explore ways of improving service delivery. Psychiatry of Old Age, primary care, residential care and specialist palliative care are key research partners and will engage in a collaborative approach to problem solving and change management throughout the project.

Results: The project aims to establish a framework for palliative interventions within dementia services, provide clarity on potential and timing for palliative interventions for people with dementia, family members and staff; guidelines for introduction of palliative interventions and referral to specialist palliative care, generate education and information materials for key personnel, service users and family members as appropriate.

Conclusions: The framework, education and information components established in this project will be applicable in other care settings in Ireland. Further developments in policy, education and research will be identified.



Last Updated: Wednesday 03 November 2010