Pre-Budget Submission 2015 Supporting Care in the Community: Living at Home as a First Option

Pre-Budget Submission 2015 Supporting Care in the Community: Living at Home as a First Option

Contents Supporting Care in the Community: Living at Home as a First Option... 3 Political leadership... 4 Government Action... 4 1. Ensure adequate resourcing of dementia specific home care and community based services and supports... 4 2. Ensure equal access to community based supports across the country... 5 3. Ensure that budgets for people with dementia are transparent, measurable and ring-fenced at regional and national level... 6 Potential Cost Savings... 6 Budget 2015 and implementation of wider Government policy... 7

Introduction The Alzheimer Society of Ireland welcomes the opportunity to submit a pre-budget submission to the Joint Committee on Finance, Public Expenditure and Reform. The Alzheimer Society of Ireland is the leading dementia specific service provider in Ireland. The Alzheimer Society of Ireland works across the country in the heart of local communities providing dementia specific services and supports and advocating for the rights and needs of all people living with dementia and their carers. Our vision is an Ireland where no one goes through dementia alone and where policies and services respond appropriately to the person with dementia and their carers, at the times they need support. A national non-profit organisation, The Alzheimer Society of Ireland is person centred, rights-based and grassroots led with the voice of the person with dementia and their carer at its core. The Alzheimer Society of Ireland also operates the Alzheimer National Helpline offering information and support to anyone affected by dementia at 1800 341 341. Supporting Care in the Community: Living at Home as a First Option As part of The Alzheimer Society of Ireland s Pre-Budget Submission 2015 1, we ask that Government adequately resource community based care for people with dementia and their carers. There are approximately 48,000 people living with dementia in Ireland. This number is expected to increase significantly in the coming years; rising to 68,216 people by 2021 and to 132,000 people by 2041 (Cahill, S. & Pierce, M, 2013). The majority of people with dementia (63%) live at home in the community. Most people living with dementia are cared for by a family member and there are approximately 50,000 dementia family carers in Ireland. People with dementia and their carers can be supported to live well with dementia in their own homes when community based services and supports are available. These services and supports include dementia specific home care, day care, respite care, social clubs, Alzheimer cafes, dementia advisors and carer support groups as well as broader community care supports such as GP services, home help, nursing services, occupational therapy, speech and language therapy and other critical primary care support services. 1 As part of a consultation process for the ASI Pre-Budget Submission 2015, an online survey was conducted. Survey respondents identified access and funding for home care and community care as a key issue for them and for the ASI Pre-Budget Submission 2015.

The publication of the National Dementia Strategy is an opportunity to commit resources to community based care that supports people to remain at home for as long as possible, which is where they want to be. For this to happen, the health and social care system needs to be reconfigured to allow people with dementia to live at home as their first option. Political leadership Government needs to do more for people with dementia living at home in the community. In the absence of the required level of community support, people with dementia will continue to be placed in long-term care prematurely, carers will continue to experience an unnecessary burden of stress and the experience of inequitable access to dementia specific home care and community based services will continue. Supporting care in the community demands political leadership. The implementation of the National Dementia Strategy that truly seeks to transform the lives of people with dementia has the potential to provide such leadership. The G8 summit held in 2013 demanded global action against dementia with a specific focus on research. A World Dementia Council has now been established and there is a focus on work with governments and stakeholders to tackle the economic, regulatory and social barriers to innovation in dementia prevention, treatment, care, and cure. There is an opportunity here for the Irish Government to harness international supports to address dementia care in a meaningful way. Government Action We are asking Government to: 1. Ensure adequate resourcing of dementia specific home care and community based services and supports 2. Ensure equal access to community based supports across the country 3. Ensure that budgets for people with dementia are transparent, measurable and ring-fenced at regional and national level The following paragraphs give a more detailed overview of these core issues: 1. Ensure adequate resourcing of dementia specific home care and community based services and supports

People with dementia must be supported to remain at home for as long as possible and where there is a dementia family carer, they must be supported to care for someone living at home. It is widely known that caring for a person with dementia compared with other caring roles, places much greater demands and strain on family members (Cahill et al., 2012). The HSE Long Stay Activity Report (2012) shows that 33.7% of the population of older people in nursing home care in 2012 were low to medium dependency. People with dementia could be supported to live at home until their needs progress to such a level that nursing home care is needed. Until then, community based supports make living at home possible and delay premature admission to long-term care and/or unnecessary stays in acute care. These services and supports include dementia specific home care, day care, respite care, social clubs, Alzheimer cafes, dementia advisors and carer support groups. People with dementia also need to access wider community care supports such as GP services, home help, nursing services, occupational therapy, speech and language therapy and other critical primary care support services. These community based services and supports must be adequately resourced. Research highlights an increase of 23,600 28,000 in formal home care use and around 23,500 in the use of intense all day/daily informal care, all by 2021 (Wren et al., 2012). The Home and Community Care Ireland Report (2013) maintains that a reasonable assumption could be made that 75,000 people may seek to avail of home help services by 2021 (up from a current (2012) rate of 48,000) and that 14,250 HCPs may be required. The Health Service Plan (2014) and more specifically the HSE Social Care Division Plan commit to Services for Older People priorities in 2014, which emphasise providing comprehensive home care and community supports, to maintain older people in their own homes and communities for as long as possible. To support this priority, both plans show that existing home help services (10.3m hours nationally) and home care packages (for 10,870 people) will be maintained at 2013 levels. An additional 23m from the nursing home support scheme (A Fair Deal) was transferred to increase home care & community supports. With the expected increase in utilisation (Wren et al., 2012) of long term care, there is a need for a more sustainable stream of funding to not only maintain home care at current levels but to allow for increases in demand of the number of people in long term care is to be met. Budget 2015 must once again maintain homecare and home help services as well as providing additional resources for the expected increase in demand. However, a wider debate about where resources are found must be engaged as funding for home care and community care should not result in cuts to long term care funding. In addition to home care supports, Budget 2015 must ensure that wider community services including primary care services accessed by people with dementia are adequately resourced in order that people can access care in the community. Investment in dementia-specific community support and wider community supports should address the over reliance on family carers (Trepel, 2012). 2. Ensure equal access to community based supports across the country

One of the resounding weaknesses of Irish home care and community based services and supports compared with those developed and delivered in other countries is that home care services are not underpinned by legislation and are not provided on a statutory basis (Cahill et al. 2012). Despite Government policy to support people to remain in their homes, there is no legal obligation on the Government to provide home care services (Timonen et al., 2012). There are also gross inequities across the country in relation to home care availability with considerable variation in the type and amount of home care services available 2. The National Economic and Social Forum (NESF) found that there were variations by Local Health Office in eligibility criteria, methods of assessment, the financial value of a Home Care Package and what type of organisation delivers the care (HCCI, 2013). There is a need to provide statutory and standardised community based supports and home care resources for the different Local Health Office areas and ensure equal access for people with dementia across the country, regardless of where a person lives. 3. Ensure that budgets for people with dementia are transparent, measurable and ring-fenced at regional and national level As part of the implementation of the National Dementia Strategy, Government must ensure that budgets for people with dementia are transparent, measurable and ring-fenced at regional and national level. Government must also ensure that funding for both the health and social care needs of people with dementia are integrated especially in light of the forthcoming financial reforms of the health system. In an editorial for the Irish Medical Journal in 2012, health economist Dominic Trepel states that a financial guarantee must be provided by the government specific to dementia care, similar to the dementia budget allocation arising from the UK, Norway and Australian Dementia Strategies. Potential Cost Savings The Alzheimer Society of Ireland believes that a community based response to dementia, with a focus on dementia specific home care is an essential and critical piece in terms of moving towards cost effective dementia care. It is important to acknowledge that carers for people with dementia providing family care in the community saved the Irish Government 807 million in 2010 3. If dementia family carers were not providing this care in the community, increasing numbers of people with dementia would be prematurely admitted to long-term care and/or acute care. Premature admission to long-term care is a costly result for Government given that the average cost per resident in long term care is 2 Department of Health and Children evaluation of home care packages (November 2009) PA Consulting Group. 3 Cahill, S., O Shea, E. and Pierce, M. (2012) Creating Excellence in Dementia Care; A Research Review for Ireland s National Dementia Strategy, TCD/NUIG

51,251 per annum 4. Community based supports play a pivotal role in assisting carers to support people with dementia to live at home for as long as possible. Donaldson and Gregson (1989) conducted an economic evaluation of community support initiatives that provided day and respite care. They found that despite additional costs of service, day care was costeffective in part by observed savings accrued in reduced long-term beds utilisation. Trepel (2012) outlines a study by Gaugler, Jarrott et al. (2003), which found that intervention groups accessing subsidised adult day care at least twice per week reduced role overload and depression. Results show an encouraging incremental cost-effectiveness ratio over the control group not receiving day care. Importantly this study concludes that dementia caregivers who use these services consistently and for longer periods of time maximise effectiveness and optimal gains are produced by encouraging early utilization of services during the caregiving career to increase the range of benefits. Budget 2015 and implementation of wider Government policy Care in the community is a stated policy aim of Government. For this policy aim to be realised and implemented, Budget 2015 will need to provide the adequate resourcing of community care services and supports. The National Positive Ageing Strategy (NPAS, 2013) states that Government policy is to support older people to live in dignity and independence in their own homes and communities for as long as possible. The NPAS has a stated aim (National Goal 3) to: Enable people to age with confidence, security and dignity in their own homes and communities for as long as possible (p. 21). The National Carers Strategy (2012) positions carers as vital to the achievement of supporting people to remain in their own homes and carers are considered a backbone of care provision in Ireland (p. 4). However, carers, themselves, need support to continue to care and Budget 2015 can ensure that community services are adequately resourced to support carers. Future Health - The Strategic Framework for Reform of the Health Service 2012-2015, commits to the development of a social and continuing care system that maximises independence and achieves value for the resources invested. This strategic policy document states that: The reforms in social care will help older people and people with disabilities to live in their homes for as long as possible rather than go into residential care (DOH, p. 2). The service reform pillar outlined in the Future Health policy document will move policy away from the current hospital-centric model of care towards a new model of integrated care which treats patients at the lowest level of complexity that is safe, timely, efficient, and as close to home as possible (p.iii). 4 Ibid.

However, despite these strategic Government policy commitments, dementia has not yet permeated into the minds of policymakers when it comes to priority-setting and the allocation of scare public resources (Cahill, O'Shea and Pierce 2012). The National Dementia Strategy will be a key document to inform Government thinking on dementia into the future. Given the Irish demographics and the costs of dementia care of just over 1.69 billion each year (Cahill, O'Shea and Pierce 2012), Government will have to find suitably sustainable and cost effective ways to support a good quality of life for the person with dementia and their carers (Irving and McGarrigle, 2012). Investing in community services and supports is an evidence-based approach to supporting people with dementia and their carers. KEY STATISTICS ON DEMENTIA Dementia is an umbrella term used to describe a range of conditions which cause changes and damage to the brain The overall cost of dementia care in Ireland is just over 1.69 billion per annum; 48% of this is attributable to family care; 43% is accounted for by residential care; formal health and social care services contribute only 9% to the total cost (Cahill et al., 2012). The average cost per person with dementia in Ireland is estimated at 40,500, consistent with per capita estimates from other countries. 5 Contact Details The Alzheimer Society of Ireland, Temple Road, Blackrock, Co. Dublin Telephone: 01 207 3800 E-mail: info@alzhiemer.ie Website: www.alzheimer.ie Alzheimer National Helpline: 1 800 341 341 References Cahill, S., O Shea, E. and Pierce, M. (2012) Creating Excellence in Dementia Care; A Research Review for Ireland s National Dementia Strategy, TCD/NUIG Department of Health and Children evaluation of home care packages (November 2009) PA Consulting Group. Department of Health (2012)The National Carers Strategy - Recognised, Supported, Empowered. Department of Health (2012) Future Health A Strategic Framework for Reform of the Health Service 2012-2015. Department of Health (2013) Positive Ageing Starts Now - The National Positive Ageing Strategy. Department of Health (2013) Healthy Ireland - A Framework for Improved Health and Wellbeing 2013 2025 5 Ibid.

Home and Community Care Ireland (2013) The Business Case for the Outsourcing of Home Care Provision and a More Efficient Use of Fair Deal Funds. A Report by EPS Consulting for Home and Community Care Ireland. Irving, K and McGarrigle, L (2012) Integrated Care Pathways for People with Dementia, Exploring the Potential for Ireland and the forthcoming National Dementia Strategy. The Alzheimer Society of Ireland Expert Policy Paper Series. Timonen, V., Doyle, M. And O Dwyer, C., (2012) Expanded, but not regulated: ambiguity in home care policy in Ireland, in Health and Social Care in the Community, Wiley-Blackwell, Volume 20, Number 2. Trepel, D (2012) Financing Dementia: What money is available, what does dementia need and will the required resources be received? The Alzheimer Society of Ireland Expert Policy Paper Series. Trepel (2012) An Update on the Economics of Dementia Care in Ireland. Irish Medical Journal. Feb; 105(2):38-9.