Background information about dementia and home care services
Home care services for people with dementia comprise community nursing services and home help services. (O’Shea, 1999). Although home support services exist to some degree in each region, it has been reported that 87% of those caring for people with dementia in the home could be categorised as receiving a low level of domiciliary support (Ruddle and O’Connor, 1993). The public health nursing service is not adequately resourced, nor is the service adequately supported by back-up services.
The home help service is regarded as a key service in home care for older people. The home help service is still a discretionary service, which contributes to variability of provision and eligibility across the country. (Lundstrom and McKeown, 1994) The service is generally not available out of hours or in an emergency. A further issue is that the home help service is generic, with few, if any of the workers trained in the management of dementia. In addition, there are a significant number of providers operating in the provision of home help type services including statutory and non-statutory (NGO) provision. This in turn leads to large inequities and variances in services. The Alzheimer Society of Ireland provides home respite services specifically for people with dementia – however, it is not comprehensive in terms of the number of hours support each person receives or in the geographic spread.
Most long-term care in the community is informal care provided by family members and friends in the community. There are an estimated 50,000 carers in Ireland looking after someone with one of the six specified symptoms of dementia; for example 25,000 carers are looking after someone with marked forgetfulness on a regular or occasional basis, while 15,000 are looking after someone with confusion to the point of interfering with everyday life (O’Shea, 2001) The overall median daily provision of care provided by family carers to people with dementia is 10 hours. (ibid) This estimate is in line from other surveys on care provision for people with dementia. (Ruddle and O’Connor, 1993)
Legislation relating to the provision of home care services
With regard to legal obligations, the Health Service Executive is empowered (under the 1970 Health Act) but not obliged or required by law to provide community care services in Ireland. Access to such services has been limited and variable within and among the regions as a result. Families are not under any legal obligation to care for their elders. There is no legally defined definition of dependency. Therefore, dependency is assessed differently according to the care group concerned and the area using a variety of different scales (McMahon and Barron, 2004).
Organisation of home care services
There is a dearth of community and home based services for people with dementia and their carers. Services available are largely provided by the non-statutory agencies (NGOs), of which there is a plethora. However, the state also provides home care services directly in particular the public health nursing, and in some cases, home carers and home helps. In the majority of cases the state is providing some of the funding for the services to the NGOs.
Home helps are provided on the basis of assessed need, taking into account medical and family circumstances. In practice, it appears that people who are living alone are more likely to receive home help. Recipients may be asked to contribute to the cost of the service if they are deemed to have sufficient means to do so.
In general, home help services managed by the statutory bodies are organised by the four regional areas as defined by the Health Service Executive. A programme manager administers the service within their region. Within each region there is a director of community care and the area would be further broken down into areas having local area administrators/superintendent public health nurses. This area administrator directly manages the public health nursing staff through the Superintendent public health nurse. The public health nurse locally either manages and assigns local home helps or liaises with a home help organiser (also employed by the community service) who would send in a home help to a home where required.
In the case of an NGO, clients are either referred to the home help organiser within the voluntary organisation or the referral will come to the organisation, which then reassigns it to a statutory home help organiser.
Financing of home care services
In ‘An Action Plan for Dementia’ (O’Shea, 1999), figures were given as to the overall and individual cost of care for a year for a person with dementia in 1997. It was estimated that the overall total cost of dementia care for the year in Ireland was €314m (lower estimate) (adjusted for inflation, the 2006 baseline estimate is just under €400m). That is equated to €10k per person per year of which €1.5k was attributed to community care and €7k was attributed to the cost of family care.
According to a report by the National Council on Ageing and Older People (O’Shea, 2000), family care accounts for 57% of the overall cost of care rising to 64% if family care is valued on the basis of home help replacement cost. By contrast, the inadequate provision of community care is evident by the fact that only 6% of the cost of dementia is attributable to community care services.
For carers, the principle financial support is the Carer’s Allowance. This is a means-tested benefit. In addition, carers may receive an annual respite care payment and they are also entitled to free schemes i.e. free travel, free TV license, telephone and electricity/gas allowances). The Carer’s Allowance is only given to people who look after someone full time and as a result they are unable to work in the open labour market. Many people do not claim this benefit as they slightly reduce their hours rather than completely give up work. (McMahon and Barron, 2004).
Kinds of home care services available
Community Care services are defined as community nursing, home helps, respite services, day care centres and meals services together with paramedical services such as physiotherapy, occupational therapy, chiropody and speech therapy.
In addition to the above, it may be possible to benefit from home nursing aids, special lifting aids, special toilet aids, special beds, training for carers in lifting and toileting and continence advice. “Meals on wheels” is solely provided by voluntary groups with funding from statutory agencies. On average those in the home in receipt of the service are supplied with meals three times a week.
- Lawlor, B et al. (1994), Prevalence of mental illness in an Elderly community dwelling population using AGECT. Irish Journal of Psychological Medicine , 11, 4 (157-159)
- McMahon, M. and Barron, B. (2004), National Background Report for Ireland , EUROFAMCARE, http://www.uke.uni-hamburg.de/extern/eurofamcare/documents/nabare_ireland_rc1_a4.pdf
- O’Shea, E. and O’Reilly, S. (1999), An Action plan for Dementia , National Council on Ageing and Older People: http://www.ncaop.ie/publications/research/intros/intro_54_Action_Plan.pdf
- O’Shea, E. (2001), The costs of caring for people with dementia and related cognitive impairments , National Council on Ageing and Older People: http://www.ncaop.ie/publications/research/intros/Intro_60_Costs_Dementia.pdf
- Ruddle, H. and O’Connor, J. (1993) Caring without Limits? A Study of Carers. Dublin: The Alzheimer Society of Ireland.
- Lundstrom, F. and McKeown, K. (1994) Home Help Services for Elderly People in Ireland, Dublin, National Council for the Elderly
Last Updated: mercredi 15 juillet 2009