Neurological Alliance of Ireland Submission to the National Dementia Strategy August 2012 1.1 Background The Neurological Alliance of Ireland is the national umbrella for over thirty not for profit organisations working with and representing the needs of people with neurological conditions and their families. The NAI was established in 1998 and works to promote the development of services and supports for all those affected by neurological conditions. As the only umbrella body dedicated to neurological issues, the NAI is recognised as a key partner in informing health and social policy in Ireland in relation to the needs of people with neurological conditions and continues to represent these issues on a range of platforms and consultative groups and through its submissions to relevant legislative and policy developments. The NAI played a key role with the Department of Health and Children in the development of the National Strategy and Policy Framework for Neurorehabilitation Services in Ireland which was published in 2011. The NAI is currently working on the programme teams for the national clinical programmes in rehabilitation medicine and outpatient neurology, providing an effective conduit to the views and expertise of organisations representing people with neurological conditions and their families. The NAI represents a number of neurological organisations where dementia is a significant issue and is committed to supporting and reflecting their views in the development of a national strategy for dementia. 1.2 Neurological Conditions in Ireland The NAI has produced a number of documents which have contributed significantly to the understanding and profile of neurological conditions in Ireland. The Standards of Care documents were developed between 1999 and 2002 and examined, for the first time in an Irish context, the challenges facing people with neurological conditions and outlined an important series of recommendations in relation to their care. The third volume in this series examined neurological conditions where cognitive decline is a significant feature and the recommendations of this report will be referred to throughout this submission. In 2010, the NAI published The Future for Neurological Conditions in Ireland: Innovations and Solutions which provided a comprehensive overview of neurological conditions in Ireland, outlining the key demographic trends and challenges associated with service provision as well as 1
the importance of research and health service reform to provide solutions to what the World Health Organisation has referred to as the greatest challenge facing public health systems in developed countries worldwide. Question A: What is your particular interest in/experience of dementia? 1.3 Dementia and Neurological Conditions Dementia represents a feature of many neurological, particularly neurodegenerative conditions. Alzheimer s disease accounts for between 50% and 60% of all cases of dementia, followed by vascular dementia (15-20%). Other causes include Lewy body dementia and frontal lobe dementia such as Pick s disease. Dementia is also associated with neurodegenerative neurological conditions such as Huntington s disease and Parkinson s disease. As the Irish population ages, the number of people developing neurological conditions associated with ageing is also set to increase. Increasing age represents by far the single strongest risk factor for dementia. Over the age of sixty five the prevalence rate for dementia nearly doubles every five years. The Neurological Alliance of Ireland has repeatedly highlighted the growing challenge of neurological and neurodegenerative disease and the need to address the long standing underinvestment and underdevelopment of services in this area. 1.4 The Neurological Alliance of Ireland and The Dementia Strategy The Neurological Alliance, as the representative umbrella for neurological issues, is keenly aware of dementia as a significant issue affecting many people with neurological conditions and their families. The NAI has long supported the call for a national dementia strategy to focus on addressing the significant challenges associated with dementia. Question B: The report, Creating Excellence in Dementia Care: A research review for Ireland s National Strategy has outlined the following elements for inclusion in the Strategy, which have been grouped below under 6 broad headings. Of the areas outlined, what should the main priorities for the strategy be? Question C: What specific issues would you like addressed in any or all of the priorities that you have selected? In 2010, the NAI published its ten point Action Plan on Neurological Care, outlining a series of priority actions in relation to key aspects of living with a neurological condition in Ireland. 2
Many of these key areas are also highlighted in the most recent comprehensive review of dementia in Ireland Creating excellence in dementia care. The NAI has therefore chosen to structure its replies to this question and make its recommendations with reference to these action points. It is instructive to note that many of the difficulties experienced by people with dementia and their families outlined by the dementia report, in terms of obtaining a diagnosis, accessing community based services and supports and securing long term care are reported across the population of people with neurological conditions in Ireland. As well as arising from common features in relation to the complexity associated with managing the requirements of these conditions, the NAI also put forward that these difficulties stem from a fundamental deficit in the way in which neurological conditions are resourced and prioritised in an Irish context. The report Creating Excellence in Dementia Care points out that Ireland significantly lags behind other developed countries in planning for dementia. Unfortunately this is also the case for our approach to the entire area of neurological conditions, with historical and continued underinvestment in services and supports at every level of healthcare, from primary care and acute hospital to rehabilitation and long term care. The full NAI ten point action plan for neurological care can be viewed at http://www.thinkingahead.ie/pages/thinking-ahead/the-action-plan Awareness Focus on Prevention In common with other neurological conditions, there has been no overall co-ordinated approach by the health services to the prevention of neurological conditions where prevention has a significant role to play in the onset or development of these conditions. There are some examples in this area, including the Fast campaign for stroke and initiatives in the area of acquired brain injury. It is notable that these have been led by the not for profit sector. The national dementia strategy should include a plan for prevention of dementia and delaying onset of neurodegenerative conditions through promoting the link between exercise, diet and brain health. Increased Public Awareness of Dementia Greater public awareness is needed to reduce the stigma associated with dementia and reduce the isolation and anxiety felt by family members and individuals with dementia themselves in talking about the condition. The genetic aspect of some neurodegenerative conditions has an additional psychological burden for family members at risk. The National Disability Strategy should promote a view of dementia as a social issue, one owned by our community and requiring a community response. Again it is notable that not for profit organisations have taken the lead in this area, especially the campaigns that have been run by the Alzheimer Society of Ireland. Not for profit organisations work tirelessly, often with very few resources, to promote greater public awareness 3
and understanding of neurological conditions. The NAI organises and co-ordinates National Brain Awareness Week each year to promote public awareness and understanding of the impact of neurological conditions. Early Diagnosis and Intervention NAI Action Plan Point 4: Developing services to ensure that people with neurological conditions can be diagnosed and treated as quickly as possible: The report Creating excellence in dementia care identifies the critical role of diagnosis and community based healthcare in dementia. The experience of people with dementia and their families is echoed by people with other neurological conditions in terms of lengthy periods to obtain a diagnosis and lack of expertise and incentive at primary care level. The value of early diagnosis applies across neurological conditions and many of the report s recommendations for developing and incentivising the role of GPs would be endorsed and supported by the NAI, particularly the development of clinical guidelines. The NAI also support the report s recommendations on communicating a diagnosis and supporting people and their families. The NAI is aware of the important role of memory clinics in diagnosing and supporting dementia and cognitive decline and recognises and supports the need for greater investment in these services to ensure that they are available around the country. In particular, the NAI notes the geographical trends in relation to dementia with higher levels outside the East of the country, where such specialist services are more likely to be in place. Community Based Services NAI Action Plan Point 7: Co-ordination and development of services in the community to support people with neurological conditions to live as independently as possible: The NAI supports the recommendations of Creating Excellence in Dementia care in relation to the development of home care, day services and other community services for people with dementia. In particular, the NAI supports the recommendation in relation to the provision of age appropriate services. Many of the issues in relation to community based services for people with dementia apply to other neurological conditions including the flexibility of supports, accessing services out of hours and services being understanding and responsive to an individual s needs. The NAI is especially cognisant of the issues facing those under 65 years of age in accessing services, again this applies across neurological conditions. Such barriers to accessing services should be removed. The NAI supports the recommendations of Creating Excellence in Dementia Care to address the growing need for palliative care services for people with end stage dementia. Again, this issue applies to other neurological conditions and the NAI is currently examining the issue of end of life care for 4
people with neurological conditions with its members and with the support of the Irish Hospice Foundation. The National Strategy should also focus on promoting and supporting the role of assistive technology in dementia. As with other neurological conditions, there is significant scope for these technologies as a compensatory strategy, but there is very limited access to such supports. Acute Care Services for People with Dementia in Acute Care Settings In common with many neurological conditions, people with dementia experience difficulty in having their needs understood and met while in an acute care setting. As with some other neurological conditions, difficulties in communication, understanding information and challenging behaviour associated with unfamiliar situations require that staff trained in recognising and dealing with these signs are available to support the person with dementia and their family. The NAI support the recommendation for greater dementia awareness and training among all hospital staff, better person centred communication strategies that directly involve family caregivers and a reduction of internal and external stressors. In common with other neurological conditions, the NAI point to the need for proper discharge planning and effective care plans from acute care, finding that the process of discharge from acute hospital is unsatisfactory for many neurological conditions. Long Stay Residential Care Services The report Creating Excellence in Dementia Care points to the lack of suitable residential accommodation for people with dementia and other neurological conditions in Ireland. International evidence recommends that people with dementia are accommodated in small scale homely and specialist care settings where trained staff can engage in therapeutic initiatives such as reality orientation, cognitive stimulation therapy and reminiscence therapy etc. In addition, the availability of rehabilitative and other therapies is extremely limited or unavailable in many nursing home settings. Meeting the needs of people with dementia for suitable residential facilities will be a key requirement for the national dementia strategy. Once again, the requirements of those under 65 years of age are of particular concern as these individuals with dementia, in common with other neurological conditions, are often accommodated in settings entirely inappropriate to their needs. Community/Acute/Long stay residential care NAI Action Plan Point 8: Ensuring that people with neurological conditions have an effective care plan and access to a key worker or case manager: Creating excellence in dementia care outlines a clear recommendation 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. The NAI strongly supports this recommendation as a key element of the proposed 5
strategy which should also be applied to the management of many other long term neurological conditions to ensure effected and co-ordinated response to need. Research Enhanced Information Systems to inform planning for dementia care The development of an appropriate response to dementia in Ireland continues to be constrained by the dearth of information on the number of people with dementia, the severity of the disease, placement patters and quality of life. These issues apply to all neurological conditions and indeed to many chronic disease areas in Ireland. It is critical that the national dementia strategy examine this area with the aim of proposing achievable solutions in an Irish context. The recommendations of the national dementia strategy in this area will have important implications in ensuring that comprehensive information systems can be put in place to enable the care and treatment of complex long term neurological conditions to be monitored throughout the progression of the condition and across different healthcare settings. Question D: Is there anything else that should be considered for inclusion in the strategy? Rights, Dignity and Personalisation The Dementia Strategy should focus on the maintenance of personhood, on quality of life, on the preservation of cognitive function, dignity and on promoting any retained ability the individual continues to manifest. Recognition of the person as a unique individual, who belongs in a social world of roles and relationships and who has a biography is required. The Scottish Dementia Strategy has adopted the Charter of Rights of People with Dementia and their Carers in Scotland: Participation: including the rights to accessible information and support to participate in decisions that affect them; to live as independently as possible with access to community facilities; to full participation in planning care and to be assisted and involved in policy making Accountability: including rights to enjoy human rights and fundamental freedoms including full respect for their dignity, beliefs, individual circumstances and privacy, and to the accountability of organisations and individuals responsible for their care and treatment for the respect, protection and fulfilment of their human rights. Non discrimination and equality including rights to be free from discrimination based on age, disability, gender, race, sexual orientation, religious beliefs, social or other status. Empowerment: including rights to appropriate levels of care providing protection, rehabilitation and encouragement to help maintain maximum independence, physical, mental, social and vocational ability and full inclusion and participation in all aspects of life, access to social and legal 6
services to enhance their autonomy, protection and care and to health and social services provided by people with appropriate training on dementia and human rights Legality: including rights to have the full range of human rights respected, protected and fulfilled, regardless of diagnosis, to information, participation in decision making and appropriate remedies and where someone lacks the capacity to take a specific action or decision, the requirement that anyone acting for them has regard for the principles and provisions of the Adults with Incapacity (Scotland) 2000 Act. In Ireland, proposed legislation around mental capacity will have significant implications for people with dementia and other neurological conditions. Recognition and Support for Family Carers NAI Action Plan Point 9: Provision of effective support for carers of people with neurological conditions: The research on carers of people with dementia points to the significant challenges and huge stress faced by these carers. This is a feature of carers of people with neurological conditions where cognitive decline and behavioural changes represent a burden over and above that of caring for a person with a physical disability or other chronic condition. The NAI carried out a survey of neurological carers in 2012 and found that 71% reported that their health has suffered as a result of caring. The survey also found reports of significant isolation and stress among neurological carers. The NAI highlights the huge debt owed by the State to carers of people with dementia and other neurological conditions and the lack of recognition of this role in society and in State remuneration of the care and services provided. The NAI view the Dementia Strategy as an important opportunity to take on board and apply the recommendations of the recent Carers Strategy in outlining an approach to dementia which strengthens and supports the role of family carers. Audit of Specialist Staffing Resources for Dementia Care NAI Action Plan Point 10: Provision of the necessary skilled staffed needed for our neurological care services: The recommendations of the NAI standards of care document (Vol III) and Creating Excellence in Dementia care point consistently to the need for staff with the necessary expertise to be involved in the diagnosis and management of dementia. Dementia care in Ireland, in common with neurological care as a whole, is characterised by a shortage of key specialist personnel. The National Strategy on Dementia must be based upon an evidence based assessment of current staffing resources within the health system to address current and future service needs. The strategy must include a census of current staffing levels in the area of dementia care and the future 7
requirements. This future requirement must incorporate both the staffing and skills requirement at all levels of the health services. Conditions associated with dementia where the condition is genetically transmitted A number of neurological conditions characterised by cognitive decline can now be identified prior to clinical presentation. Susceptibility can be assessed using genetic markers. Not everyone at risk wishes to know their status with regard to inherited neurological conditions and it remains a highly individual choice to have a genetic test for an inherited neurological disorder. The NAI Standards of Care Vol III outlines a series of recommendations including the provision of genetic counselling to all at risk adults with waiting periods for this service kept to a minimum. Psychological and neuropsychological support services should also be available to those at risk. Neurorehabilitation NAI Action Plan Point 6: Provision of access to specialist rehabilitation for people with a neurological condition: Neurorehabiltation is an essential component of dementia care, providing the techniques to enable the individual and family to cope with the effects of cognitive decline and put in place compensation strategies and aids. Neuropsychological assessment is a vital tool for identifying those showing signs of cognitive decline as well as monitoring the progression of the condition. The report Creating Excellence in Dementia Care, points to the scarcity of service provision in both of these specialist areas, particularly outside of the main urban centres. Legal Issues There are significant legal implications involved in the loss of autonomy by the individual affected by dementia. The current changes to mental capacity legislation should be considered as part of the development of the National Dementia Strategy with the implications for education, support and education for those affected and their families as well as health professionals and the wider community working with people with dementia. It is also imperative that those experiencing dementia receive as early a diagnosis as possible so that they can be involved in understanding the legal implications for the future. Training and Information for Staff working across the health services Both the Standards of Care (Vol III) and Creating Excellence in dementia care outline the need for greater awareness and training among staff working across health and social care services in identifying and working with people with dementia. Once again, the NAI stress that this applies across neurological conditions and recommendations of the national dementia strategy in this 8
regard will be awaited with keen interest by the NAI for their implications for neurological care as a whole. Development and incentivising of training modules for staff in neurological conditions will be critical in improving dementia care and wider neurological care. Consultation and Engagement The NAI welcomes this public call for submissions as an opportunity for groups and individuals affected by these issues to convey their views and experiences and make recommendations for change. The NAI hopes that the national dementia strategy will go further and ensure that it engages in a fully consultative process, particularly with individuals and their families, in the development of the strategy and agreement on the final document. The strategy should also build in structures for ongoing consultation and engagement with individuals and their families around the design and delivery of services. The Dementia Strategy in the overall context of planning for neurological care in Ireland NAI Action Plan Point 1: Committing to protecting and improving neurological care: The development of a National Strategy on Dementia is viewed by the NAI as a vital step in recognising the potential burden of illness neurological conditions will place on our health services in the near future and the need to urgently put in place appropriate services to respond to emerging needs. The National Strategy on Dementia should form part of a co-ordinated and comprehensive response to neurological conditions within the health services and should explicitly reference its role as part of an overall commitment to prioritising neurological disease in this country. NAI Action Plan Point 2: Developing and implementing a comprehensive plan for neurological care in the health services: Like many other long term neurological conditions, dementia is a neurological condition with a significant need for co-ordinated care at each stage of the person s journey. The National Dementia Strategy provides a significant opportunity to develop a model of care which is centred around the needs of the individual and their family and remains responsive to those needs over time and across different healthcare settings. The strategy also has an opportunity to outline a range of services and supports which recognise the wider needs of the individual and their family to remain involved in their communities, to live in their home as long as possible and to have real choices about their care. By properly addressing the needs of people with dementia, Ireland can develop an appropriate response to the needs of people with other long term neurological conditions. Recognising the Importance of the Not for Profit Sector in Dementia Care 9
NAI Action Plan Point 3: Protecting funding to charities that are central to Ireland s neurological care services: The report Creating Excellence in Dementia Care highlights the key role of the Alzheimer s Society of Ireland in complementing and supplementing the gaps in the current health services in relation to meeting the needs of people with dementia and their families. Other NAI members, including the Huntington s Disease Association provide vital support, information and counselling to individuals and their families. The Dementia Strategy should aim to strengthen the links between the formal health services and those of the voluntary sector specifically focusing on how enhanced integration and co-ordination can be achieved for individuals and their carers. Ireland is unique in its significant reliance on non statutory organisations to provide services and supports for people with neurological conditions and their families. The Dementia Strategy provides an opportunity to recognise the vital work of these not for profit neurological organisations and outline a blueprint for real engagement with them aimed at improving neurological care in this country as a whole. Conclusion In summary: 1. The Neurological Alliance of Ireland represents over thirty not for profit organisations working with people with neurological conditions. As dementia is a significant issue in relation to many neurological conditions, the NAI strongly supports the views and engagement of its member organisations in the development of a national strategy for dementia 2. Many of the issues and challenges associated with dementia are common to neurological conditions as a whole and reflect the lack of planning and underdevelopment of services and supports in this area in Ireland. In view of this, the NAI has outlined its recommendations in relation to dementia care with reference its action plan for neurological care. 3. The dementia strategy should include a focus on delaying onset and prevention as well as promoting increased public awareness of dementia, areas which, in common with other neurological conditions, not for profit organisations have played a leading role 4. In common with many neurological conditions, there is a need for specialist services to support early diagnosis and intervention, dedicated flexible community based services, home care support, provision for long stay residential care, case management models of integrated care and end of life services for people with dementia 10
5. As with other neurological conditions, the development of responsive dementia care is significantly constrained by the lack of appropriate information systems to collate information on the number of people with dementia, severity of the disease, placement patterns and quality of life 6. Other areas for consideration outlined by the NAI in the context of the National Dementia Strategy are: Rights, Dignity and Personalisation Recognition and Support for Family Carers Audit of Specialist Staffing Resources for Dementia Care Conditions associated with dementia where the condition is genetically transmitted Legal Issues Neurorehabilitation Training and Information for Staff working across the health services Consultation and Engagement The Dementia Strategy in the overall context of planning for neurological care in Ireland Recognising the Importance of the Not for Profit Sector in Dementia Care List of member organisations of the Neurological Alliance of Ireland Acquired Brain Injury Ireland Alzheimer Society of Ireland Aware Brainwave The Irish Epilepsy Association Cheshire Ireland Chronic Pain Ireland Dystonia Ireland Enable Ireland Headway Huntington s Disease Association of Ireland Irish Heart Foundation Irish Motor Neurone Disease Association Meningitis Research Foundation Migraine Association of Ireland Muscular Dystrophy Ireland Neurofibromatosis Association of Ireland 11
North West MS Therapy Centre Parkinson s Association of Ireland Post Polio Support Group Spina Bifida Hydrocephalus Ireland Syringomyelia Support Group of Ireland Spinal Injuries Ireland The Rehab Group Volunteer Stroke Scheme Associate Members Irish Society of Physicians in Geriatric Medicine Myasthenia Gravis Association of Ireland Progressive Supranuclear Palsy Association Irish Institute of Clinical Neurosciences 12