Cristo resucitado: el amor vence a la muerte

It is as well to begin by outlining the current realities with respect to the care of people with dementia in this country. The current system of care for older people with dementia is seriously under-funded, and there is likely to be strong resistance to any attempt to commit more public expenditure in this area in the

future. This is the reality facing social planners in Ireland today. Even when additional resources are sanctioned for care of the elderly the amounts are small relative to overall need, and minuscule relative to the growth in expenditure on acute hospital care services and pharmaceutical products. The vast majority of people with dementia live at home in the community and family care is the main bulwark of support for these people. The state usually intervenes when family care is absent, or breaks down, but is less willing to offer practical support to ensure the continuation of family care in a complementary sense.

Generic community care services, geared to meeting the needs of all older people, rather than meeting the distinct needs of people with dementia, provide the bulk of community support for people living at home. Consequently, the access of people with dementia and their carers to adequate assessment services, home care services, day care services and respite care is both limited and

variable across the country. Dementia-specific community services, where they exist, tend to be localised and dependent on the existence of voluntary

providers, mainly the Alzheimer Societies. There is also a shortage of

dementia-specific, residential care beds, resulting in some people being cared for in inappropriate settings. The placement of disruptive, aggressive, or wandering patients is particularly difficult and causes most concern to providers, given the general reluctance to admit this type of patient into

conventional long-stay units. The situation is exacerbated by the reluctance of the private sector to admit, or keep, disruptive dementia patients, making it even more difficult to find suitable accommodation for such people.

There is a serious supply-side problem in the provision of community and residential care services for people with dementia in this country. The main challenge is to find ways to stimulate the supply of community-based services both inside and outside of traditional statutory routes. On the assumption that all of the gaps in social services provision for people with dementia and their carers will not be met by the public sector, or the private sector, there is an imperative to explore ways to grow the social care system in the years ahead. Social entrepreneurship may be the key to expanding community care provision in the future. Social entrepreneurs are an important source of social innovation. They identify social need, but more importantly they identify new ways of addressing these needs, making use of existing social capital to create new forms of supply. Finding ways to stimulate social entrepreneurship at the local level will be an important part of any new strategy for dementia care in this country. Equally important will be strategies to stimulate demand for any new services from patients and families, and from the State. Innovation on the

supply side will have to be matched by innovation on the demand side, linked to new funding arrangements, if community services for people with dementia are to be expanded.

1.4 Methodology

The plan is a reflection of the views of health care professionals and policy- makers working in the area of dementia. We undertook extensive consultation with the national representative organisations associated with the professions relevant to dementia care. The following organisations were consulted over a six-month period:

• The Carer’s Association

• Consultant Geriatricians

• Consultant Psychiatrists specialising in the Psychiatry of Old Age

• The Irish College of General Practitioners

• The Institute of Public Health Nursing

• Irish Senior Citizen’s Parliament

• Sonas aPc

• Irish Association of Social Workers

• The Association of Occupational Therapists of Ireland

• The Psychiatric Nurses Association of Ireland

• The Alzheimer’s Society of Ireland

• Western Alzheimer’s Foundation

• Irish Registered Nursing Homes Association

• Irish Association of Older People

• Representatives of home help service providers

• Representatives of long-stay care providers

• Representatives from each of the health boards

• The Dementia Services Information and Development Centre at St. James’s

We met each of the groups separately and the interviews were, for the most part, unstructured. Prior to the meeting, people were sent a two-page outline of the type of issues that we were likely to cover during the consultation, thereby providing a framework for the face-to-face discussions that followed. The main headings for the discussion were as follows: an overview of services, the

diagnosis of dementia, community care services, support for carers, non- residential alternatives to home care, residential care, and co-ordination issues. Respondents were given the choice of following this agenda, or concentrating on the topic/s of most interest to them. People varied in how they responded to the interview, but most people valued the opportunity to explore the issues in a comprehensive manner.

The focus of the exchanges was on best practice. Respondents were informed that resource constraints would be considered only on an ex-post basis, when the discussion turned to the funding of the best practice model adopted. People

were asked to rank the most important changes necessary to improve the quality of life of people with dementia and their carers. This question allowed some comparison of views expressed, and ensured homogeneity in the collection of information on overall priorities. People were also given an opportunity to respond to a pre-first draft document, which reflected on a best practice model for dementia, at a seminar in Galway in October 1998. All of the people

interviewed earlier for the report were invited to this meeting. The seminar also included people who had expressed an interest in meeting with us, but whom we had not managed to meet prior to the seminar.