Ireland : National Dementia Strategy by Annette J Dunlea
Published In The Carrigdhoun Newspaper 4th Feb 2012 p.9
Dementia is a broad term used to describe a group of symptoms. These include impairment in memory, intellect, judgment, language, insight and deterioration in social skills. The individual diagnosed with dementia may also demonstrate an acute sensitivity to his or her built and social environment and a high level of stress.While over 100 different diseases will produce the symptoms of dementia, it is known that Alzheimer’s Disease is the most common cause and accounts for more than 50% of all cases. Other common causes include vascular brain disease (Multi-Infarct or Vascular Dementia), mixed dementia (Alzheimer’s Disease and Vascular Dementia) and Lewy Body’s Disease.
The Government has given a commitment to developing a new Alzheimer’s Disease and other related Dementia Strategy by 2013. A report that will lay the foundation for Ireland’s first National Strategy for Dementia was launched by the Minister for Health, James Reilly, in Trinity College Dublin on January 18th. The report estimates prevalence rates of dementia in Ireland; quantifies the economic and social costs of dementia; assesses current service availability for people with dementia and best practice in dementia care nationally and internationally. It was launched on the occasion of the opening of the conference ‘Developing a National Dementia Strategy’. The report was funded by The Atlantic Philanthropies to provide evidence-based research for the purpose of supporting the development of a National Dementia Strategy, which the Government has promised to develop by 2013.
Trinity Associate Professor Suzanne Cahill said: “At a time when across Europe, much progress has been made in mobilising joint action in the fight against dementia, dementia remains hidden and largely invisible in Ireland and is a hugely underfunded and underprioritised health issue in the country. Several countries including England, France, Norway, the Netherlands, Sweden and Australia have now well developed strategies, some indeed being onto their second and third iterations. The recent government promise of a new National Dementia Strategy for Ireland by 2013 is both opportune and timely. Although the number of people with dementia is set to rise significantly, having an evidence base available to inform the direction of future public policy on dementia makes it a lot easier to design care services supporting the individual and family members to live well with dementia and to die in dignity with dementia.” There are about 41,740 people with dementia in Ireland, of whom 26,000 live at home.4,000 new cases of dementia arise in the general Irish population every year and the incidence of dementia is higher than cancer and heart disease with numbers expected to more than treble over the next thirty years. The research review suggests that the majority of the 26,104 people with dementia living at home in the community most probably do not have a formal diagnosis.
In Ireland, early diagnosis, and sometimes any diagnosis, is the exception rather than the rule and Irish GPs like their European counterparts experience difficulty diagnosing this illness and would welcome more training and resources. Family caregivers are the linchpin to the success of community care but only a small proportion of people with dementia are receiving critical services such as day care, public health nursing, home care packages and respite. Community care services for people with dementia and their carers remain under-developed, inequitable, and fragmented. In this country very few people with dementia have been allocated a case manager to directly represent their interests. One of the resounding weaknesses of Irish home care services is that these services are not underpinned by legislation nor are they provided on a statutory basis. In the absence of the required level of community support, people with dementia will continue to be placed in long-term care prematurely. A review of care for people with dementia in acute care settings in Ireland is urgently needed. A dementia champions’ programme in acute hospitals would facilitate a more person-centred approach to care. Two thirds of people in long stay care are estimated to have dementia. In Ireland there are few alternates to the nursing home model of care and whilst some facilities have dementia specific beds these are the exception rather than the rule. International evidence suggests a trend towards providing care for people with dementia in long-stay settings in small-scale (maximum of 8 to 10) homely and specialised care settings.
The strategy raised the following issues: a need for greater emphasis on primary prevention and on ways of avoiding or delaying the illness particularly through reducing heart disease and stroke, an enhanced public awareness about dementiac and an early diagnosis through improving access to memory clinics and enhanced multidisciplinary training and education in dementia for primary care workers.More hospital staff and people working in long-stay settings and case management models of integrated care.Expansion of dedicated and flexible community-based services, for example, day care services and family support programmes, for people with dementia and their carers.Development of new and expanded psychosocial approaches to complement existing medical and neurological models of service delivery in the community and in residential care units.Development of small-scale, appropriately designed, residential care units.Greater awareness, ownership and leadership of dementia in the acute care sector.Further expansion and availability of palliative care services for people dying of and with a dementia.Development of appropriate services for people with early-onset dementia, including people with Down syndrome.An enhanced information systems on the number of people with dementia, severity of the disease, placement patterns and quality of life.”The next stage of the process in developing a national strategy will require direct consultation with people with dementia, their family members and with all relevant stakeholders to ensure the development of an inclusive and holistic strategy on dementia that will stand the test of time and will reflect the needs and interests of the key stakeholders. Policy formulation and implementation for dementia requires the direct involvement of the Department of Health and consultation with a much wider coalition of interests and stakeholders,” concluded co-author, NUI Galway’s Professor Eamon O’Shea. This report was written by three expert authors: Associate Professor Suzanne Cahill is Director of DSIDC’s Living with Dementia research programme, School of Social Work and Social Policy, Trinity College Dublin and is a Principal Investigator of the research. Professor Eamon O’Shea is Personal Professor, Department of Economics, National University of Ireland, Galway, based at the Irish Centre for Social Gerontology in NUIG, and is a co-Principal Investigator of the research. Dr Maria Pierce is Research Fellow at DSIDC’s Living with Dementia research programme, School of Social Work and Social Policy, Trinity College Dublin.
The estimated cost of formal and informal care for dementia worldwide is currently in excess of 600 billion dollars accounting for 1% of the world’s gross domestic product. The Irish government gave a commitment in 2010 to develop and implement a Strategy which to be effective must be based on reliable research. The purpose of this research review is to provide the data required by collating estimates of current and future prevalence rates, costs and service provision. It also reviews models of local and international best practice placing an emphasis on those which are person-centred and where the individual is treated as a full citizen with accompanying rights. The research review examines the regional prevalence of dementia in Ireland and estimates the increase in numbers over the next thirty years.
The figures for Ireland match the costs per individual with dementia in other countries and underpin the need for a structured and cost effective approach to dementia in this country. The research review has found that good models of dementia care have been developed in Ireland over the past twenty years but that the level of care provision is very uneven throughout the country with some areas offering little or no support. The review also identifies major deficiencies in the standard of care of individuals with dementia in both acute hospital and long-stay settings. One of the few advantages for Ireland of being a comparatively latecomer in forming a National Dementia Strategy is the opportunity to learn from the achievements and failures of other countries.Dementia is a progressive condition that largely affects older people, impacting on their memory, language, ability to communicate, mood and personality. The course of the illness may be gradual and sometimes subtle, as is classically the case in Alzheimer’s disease. While dementia is a medical condition, recent insights from the psychosocial, sociopolitical and public health perspectives have focused attention on the human, social and economic implications of the disease.The new Strategy has the potential to bring about a major change in public attitudes to dementia in Ireland and to change expectations in regard to the rights of people with dementia. Through the Strategy it should be possible to formulate a plan that emphasises the importance of the person with dementia in decision-making and the role of families and local communities in supporting community-based preferences, wherever possible. It should be possible to develop a plan that will dispel myths, shame and stigma surrounding dementia and enable people to live well with dementia, and promote their autonomy and well-being. It should be possible to develop a Strategy so that people can die in dignity with dementia assured that their complex needs are met by an educated workforce skilled in dementia care and in gerontological nursing and palliative care.The Irish government will develop a national Alzheimer’s and other dementias strategy by 2013 to increase awareness, ensure early diagnosis and intervention, and development of enhanced community based services. This strategy will be implemented over five years.The purpose of this report is to create the evidence-based research that will help to lay the foundations for the new Strategy.
Living well with dementia requires an acceptance by society of the right of people with dementia to live at home in their own communities for as long as possible and practicable.Personcentred care must be a guiding principle and the unique value of the “person” must be recognised in every individual irrespective of his or her level of cognitive impairment. Care needs to be provided in such a way that the person with dementia is valued, respected, treated with dignity and supported to live well with dementia and enjoy a good quality of life. For this to happen, the environment of care needs to be improved through the mobilisation of central and local government resources and local community enterprise to provide the opportunities, services and infrastructure to support the choices of people with dementia to remain living in their own homes.In reviewing the research evidence for this report, a substantive body of published literature was found, demonstrating that caring for a person with dementia compared with other caring roles, places much greater demands and strain on family members.The evidence from this study confirms that community support services for people with dementia and their carers are under-developed and fragmented in this country.The baseline profile of community services is low and only a small proportion of people with dementia are known to service providers.
The report’s view is that the best way to ensure that people get the services they need is to develop a system of case management for people with dementia and have available ‘dementia champions’ to assist and support people in their journey through the disease trajectory. In this country, very few people with dementia have been allocated a case manager or even a key worker to directly represent their interests as consumers and citizens. A case manager would facilitate needs assessment, oversee the development of a care plan, co-ordinate the delivery of public, private and voluntary services and monitor outcomes at a community level, including the transition to and from hospital. A case manager would be a person whom the individual with dementia and family members could trust; a key contact person knowledgeable about a whole range of pertinent dementia related issues. This case management approach could be accommodated within the existing framework for health and social services.The hospital experience can be extremely frightening and distressing for a person with a moderate to advanced dementia.There needs to be a major review of care for people with dementia in acute settings in Ireland.Formal assessment and diagnosis of patients admitted to hospital who might have dementia is a necessary condition for better care and support, including appropriate long-term placement.More training for general hospital staff to recognise the symptoms of dementia and to provide dementia-friendly care in hospital settings, right up to end-of-life is also required.There is also a need for a new and integrated dementia skills and knowledge programme to guide formal training and education of staff working with people with dementia in residential care settings.
Many countries have now developed action plans and strategies to support investment in infrastructure, administrative systems and services for people with dementia. The various plans that are now available are relatively consistent and convergent with respect to what needs to be done with a common emphasis on: primary prevention; changing private and public attitudes to the disease; diagnosis; improving quality of life and quality of care; training and education for all staff including those in primary care; more day centres and customised residential care; developing timely and appropriate care pathways; and research and policy implementation. Most countries with action plans on dementia have prioritised core areas.The French approach focuses on a broad range of areas especially raising public awareness of dementia.What each of these countries along with other countries with action plans have in common is an emphasis on the importance of the person with dementia in decision-making and the role that families and communities play in facilitating people with dementia to live well with the disease. Almost all of the strategies have succeeded in generating additional resources for dementia, most noticeably in France, where there has been a significant increase in public investment in dementia care.There is an understanding now of the primary importance of the person with dementia in any future plan and the role that families and communities play in affecting the environment of care for people with dementia. Given that the economic and social costs of dementia are significant, new investment will be needed to transform the lives of people affected by the disease. In the light of current budget constraints, some of that new investment will have to be paid for through the reallocation of resources within the existing health budget. That is a task for the next stage in the development of a new Strategy for dementia, but it is an important part of consensus building for the creation of a new architecture of care for people with dementia, one that is focused on prevention and with living well with dementia in familiar home settings.For people worried about a family member with dementia contacted the person’s doctor and your local district nurse for a diagnosis and to see what services are available in the local community.