Monitoring and evaluation

There is clearly a need for the implementation of this action plan to be

monitored. This is standard procedure in places where similar plans have been put in place (Ageing and Disability Department: NSW Health, 1996; Howe, 1997). An implementation committee should be established, comprising representatives from the main agencies working in the field. The National Council on Ageing and Older People should also be represented on this committee. The committee should have a monitoring and review role with

respect to the plan and should be allocated adequate resources to allow it to function efficiently and effectively. The committee should develop

performance and milestone indicators for the implementation of the strategies set out in the plan. The committee should report annually on progress with respect to the targets set out in the plan and produce an overall report on outcomes at the end of three years. The committee should also have

responsibility for the evaluation of pilot projects and demonstration projects funded to promote good practice. To assist it in the task of data collection, the committee should draw on the resources of the Dementia Services Information and Development Centre at St. James's Hospital.

There are a variety of different approaches used to treat people with dementia, and not enough information on the relative merits of various strategies of care. Good practice needs to be identified and replicated; bad practice should also be identified and then eliminated. In that regard, the Dementia Services

Information and Development Centre at St. James's Hospital can play a major role in effecting improvement and change in services for people with dementia in this country through the dissemination of information on both process and outcome in the field. For the centre to function effectively as a national agency, it is important that it develops good communication links with all people

working in the area of dementia, in all parts of the country. The centre should be multi-disciplinary in staffing and orientation, reflecting the importance and value of a holistic approach to dementia, in keeping with what we know about optimal care strategies for people with dementia.

Issues of quality pervade all aspects of the care of people with dementia.

However, data on quality of care in the dementia services are difficult to obtain and the ability to measure outcomes and assess service efficacy is particularly limited in this field. The care of a person with dementia is multifaceted with care inputs from a variety of health and social care professionals making it difficult to construct a single outcome measure based on a generalised health state classification system. There are also special problems in measuring quality in this field. Primary among these difficulties is the fact that a person with dementia is often incapable of evaluating the quality of care and

communicating concerns about it because of cognitive difficulties. Both depression and challenging behaviour in the person with dementia may, of course, be a reflection on the quality of care, but this is very difficult to establish with any degree of certainty. The impact of care-giving on family members also needs to be established since care is an interactive relationship between carer and patient containing the potential to confer both positive and negative affects on carers (Schulz et al, 1995).

Notwithstanding these difficulties, there have been a number of attempts to measure well-being in people with dementia. There are single-attribute

outcome measures available for each of the different domains associated with dementia (Ramsay et al 1995; Higginson et al, 1997). These domains include: physical health, activities of daily living, instrumental activities of daily living, psychological well-being, cognitive decline, inappropriate behaviour, social functioning, behaviour and effect, and consumer satisfaction. For carers the domains include the following elements: physical health, psychological well- being incorporating stress, burden and coping, social functioning, satisfaction, knowledge and skills, and co-ordination/communication. Most of the scales used in these various domains have been developed for the purpose of

assessment and diagnosis, or to measure the effect of particular programmes (Lawton, 1991). The difficulty lies in combining the scales used to measure these various domains into one single outcome measure for people with

dementia and their carers (Lawton, 1994). This is the challenge facing us with respect to measuring health and social gain in dementia care. In truth, outcome measures in this area are still at a very early stage and it will be some time before we can combine these measures to make judgements on the quality of care for dementia sufferers. At the same time, we need to move beyond simplistic and vague generalisations about outcome which unfortunately characterises much of the discussion about health and social gain in the health services. This will only be achieved through more research into quality of care in dementia services.

24. We recommend the establishment of an implementation committee to

oversee the development of this plan.

25. We recommend that the Dementia Services Information and Development

Centre at St James's receives appropriate funding to allow it to function as a national centre for the identification and dissemination of information on best practice in dementia care in Ireland.