Colette Kelleher (Independent) | Oireachtas source

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?