Wednesday, 21 February 2018
National Dementia Strategy
I thank the Cathaoirleach for allowing me to raise this important issue and I welcome the Minister of State, Deputy Daly, to the House. Dementia is an issue that affects every community throughout Ireland, and an estimated 55,000 people are living with the condition, with this figure expected to more than double over the next 20 years. People with dementia need a wide range of community services that will support them from the moment of diagnosis and throughout their journey. We are all aware of the significant gaps that exist in these vital services and supports.
Under the national dementia strategy, the HSE committed to reviewing health and personal social services for people with dementia to identify these gaps and prioritise areas for action. I am aware that this mapping project was undertaken by the HSE in partnership with the Alzheimer Society of Ireland and concluded in October 2017. That was four months ago and during those four months another 1,300 people have developed dementia, and still the findings of the HSE review have yet to be published.
As co-convener of the all-party Oireachtas group on dementia, along with Deputy Mary Butler, I am acutely aware of the lack of equity in the provision of dementia services. In our budget 2018 proposals we advised the Government to provide funding for 30 dementia advisers throughout the country, increasing this funding over the following two years to reach 90 dementia advisers, one for each primary care network. Dementia advisers signpost people to services and provide much-needed support training, information and support to families and communities, and yet there are only eight of these advisers in Ireland. Access is on the basis of a postcode lottery, and for people living in counties such as Mayo, Roscommon, Kildare, Wicklow, Meath and Wexford, where the demographic profile and prevalence rates for dementia confirm a strong dementia population, this vital support does not exist.
The gap in post-diagnostic support was also highlighted recently by a former Minister for Justice, Nora Owen, on 8 February at the all-party Oireachtas group on dementia in Leinster House, and again in conversation on radio with Marian Finucane on Saturday last. She told us that it took 18 months from her husband Brian’s diagnosis of dementia to a visit from the HSE occupational therapist. That is a very long waiting time. This is not good enough for the estimated 4.000 people who develop dementia each year. That is at least 11 people per day. Those are not my estimates, rather they come from the official HSE Understand Together information campaign.
Other gaps that exist include the lack of intensive home care packages for the majority of people with dementia who want to remain living in their own homes as part of their communities. The all-party group advised that an additional €6 million should be invested in intensive home care packages for people with dementia this year, moving towards €30 million by 2021. Such funding needs be ring-fenced and there must be equality of access, with these packages being made available to people with dementia under the age of 65.
We also need to address the gaps that exist in services and supports for specific groups, particularly for those living with dementia and Down's syndrome. People with Down's syndrome are at a much higher risk of developing dementia. An estimated 700 people with dementia and Down's syndrome live at home with ageing parents. Professor Mary McCarron, who presented to our group in June, estimated that 88% of people with Down's syndrome will develop dementia compared with 7% of the general population. We are not prepared for this challenge and must begin to establish regional centres of excellence with trained and experienced staff to complete assessments and to offer advice and support to people with Down's syndrome living with dementia and their family members.While I welcome the work being done by the HSE’s national dementia office to implement the national dementia strategy, the Government must now give a clear commitment that it will provide the resources required to plug the gaps which exist in dementia community-based services and supports. Will the Minister of State ensure the findings of the HSE’s mapping project, completed four months ago in October, are published as soon as possible? Will he also set out clearly the specific actions that will be taken to address and close the gaps in each community in order people with dementia and their carers all over Ireland can have a better life?
I thank Senator Kelleher for raising this important matter and for giving me the opportunity to respond to the issues raised.
With some 55,000 people living with dementia, and 4,000 new diagnoses every year, it is important to ensure appropriate services are available to meet the various needs of people with dementia. To determine what supports are required, a mapping of services currently available needed to be conducted. To support the future development of services and supports for people with dementia, the HSE’s national dementia office and the Alzheimer Society of Ireland collaborated on a project to map dementia specific community-based services across the country. This measure is in line with the national dementia strategy which calls on the HSE to critically review health and personal social services for people with dementia, to identify gaps in existing provision and to prioritise areas for action in accordance with resource availability, with priority being given to the most urgent deficits which can be addressed either within or by reconfiguring existing resources.
This project is one of a series of data collection measures being taken by the national dementia office to increase our knowledge of dementia and the services supporting people with dementia. The project was concluded last October. It illustrates what dementia specific services are available in locations across the country and will support the development and planning of resources in the future. Findings also show that existing services are concentrated around dementia specific day care centres and carer support programmes.
While the final draft of the report has been sent to the HSE and the Alzheimer Society of Ireland for approval, it should be noted the report has not yet been adopted. That said, the national dementia office has used the findings from this project to develop a service finder, which is now available on the HSE’s www.understandtogether.ie website. The service finder allows people to search for dementia specific community services in their area. The national dementia office is working with the Centre for Economic and Social Research in Dementia in NUI Galway to identify the full range of services people with dementia can access to further populate the service finder. The evidence will be used to support dementia service planning in each community health organisation area.
The Department of Health is determined to work with the HSE in providing the supports that people with dementia need, irrespective of their location, as well as to ensure that the national dementia strategy is implemented as fully as possible. Resources have been secured from the Dormant Accounts Fund to support people with dementia and their carers across a range of measures such as post-diagnostic supports, assistive technology libraries, community groups and a national dementia registry. Additionally, €9 million is provided in the 2018 HSE’s national service plan for intensive home care packages, many of which are provided to people with dementia. These projects highlight the commitment of the Department of Health to improving the range and quality of supports to people with dementia across the country.
The questions remain unanswered. When will the report be adopted? Who is responsible for its adoption? When will it be published? When will the service planning in each of the community health organisation areas commence and finish?
As the prevalence of dementia increases, greater efforts must be made to provide a range of support services for people with dementia. The national dementia strategy was created with the aim of improving dementia care and to enable people with dementia to continue living and participating in their own communities for as long as possible. The mapping of dementia specific services allows us to see what supports are available and, more importantly, which areas are not offering adequate supports.
The national dementia office and the Alzheimer Society of Ireland have carried out extensive work to map these services across the island. I commend them on this work. The information they have gathered will provide an opportunity for the development of resources in communities all over Ireland and will deliver valuable services with dementia in a greater number of locations.
The HSE has not adopted it as yet. I do not know when it plans to do so. I will find out and get back to the Senator on that. I expect it will be published as soon as it is adopted but not ahead of time.