Dáil debates

Thursday, 14 May 2015

National Dementia Strategy Implementation: Statements


11:20 am

Photo of Caoimhghín Ó CaoláinCaoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein) | Oireachtas source

Cuirim an-fháilte roimh an deis caint ar an ábhar fíorthábhachtach seo. Is galair iad galar Alzheimer agus na cinn atá gaolta leis a chuireann as do suas nó anuas le 48,000 duine sa tír seo. An bealach is fearr le dul i ngleic leis ná cinntiú gur féidir le daoine fanacht ina dtithe féin. Cinntíonn seo gur féidir leo saol níos iomláine a chaitheamh chomh maith le costas níos lú a bheith ar an Stát. Tá buairt orm nach bhfuil straitéis á cur i bhfeidhm i gceart go fóill áfach.

I hosted a briefing by The Alzheimer Society of Ireland at the end of March which afforded those of us who attended a chance to engage with both the overarching national dementia strategy and the personal experience of caring. I thank all those who came before Deputies, Senators and support staff on that day. Their stories, insights and personal experiences were hugely illuminating across all of these areas. As I said at that event, we listen today in order that we can plan for tomorrow. That is still the case.

There are almost 48,000 people living with dementia in Ireland today and over 60% of these individuals live in their own homes. The concept of dementia needs to be understood as a road, as a journey, rather than just a static point, a destination. The strategy was published in December 2014 and identifies a number of priority action areas, including better awareness and understanding; timely diagnosis and intervention; integrated services, supports and care; research and information systems; and training and education. The strategy was published on foot of a consultative process that involved various stakeholders across the sector, including clinical and patient groups. While it acknowledges that most people with dementia live in their communities and wish to continue to do so, more must be done to allow them to make adjustments to their homes. Support schemes for these renovations should be extended and run beyond 2015. Hospitals are often used to care, in the short or even the medium term, for elderly patients with dementia, despite being ill-equipped and poorly designed to provide that necessary care.

I recognise that awareness of the condition has increased. The number of calls to the national helpline which is run by The Alzheimer Society of Ireland increased by 20% last year. A monitoring group, chaired by the Department of Health, is being established to assist with and advise on implementation of the strategy, including the national dementia strategy implementation programme. Its remit is to monitor and assess progress in the implementation of the strategy. Membership of the group includes many of the members of the advisory group established to support the development of the strategy, as well as four other members, including a representative of those living with dementia, a general practitioner, a representative of Atlantic Philanthropies and a representative of the HSE’s national dementia strategy implementation office. There is a particular focus on people under 65 years with dementia and the need to make hospitals dementia-friendly from admission to discharge. This is to be welcomed. The strategy has matched funding from the Department of Health, the HSE and Atlantic Philanthropies, with the final organisation contributing €12 million of the overall €27.5 million set aside.

The national dementia strategy implementation programme will include an allocation of approximately €22.1 million for the provision of intensive home supports, roughly €2.7 million for a dementia awareness programme, with funding for an education programme for GPs and primary care teams consisting of €1.2 million and €1.5 million for the national dementia strategy implementation office.

Let us look at some of the facts. January 2015 saw the first national survey of provision for people with dementia in long-term care by the dementia services information and development centre. Some of the areas it highlighted were as follows: 54 units, some 11%, had specialist care units for people with dementia; only 66 respite beds were available in the 54 units to cater for the needs of the 30,000 people known to be living with dementia in the community; and in HSE operated facilities only one third of nursing staff and health care attendants had been specially trained. The Minister and I will both acknowledge how absolutely unacceptable these facts are. Their exposure is welcome, but the fact that they reflect the current state of affairs is most concerning.

It has been estimated that the annual cost of dementia could be in the region of €1.69 billion and the average annual cost per person with dementia is some €40,500. We know that we must do the best possible for individual patients and also realise that in order to control the State spend we must support as many individuals as possible in their wish to stay in their own homes.

I am concerned about implementation of some of the elements of the strategy. There have been reports that suggest that as few as one in 60 families who are caring for someone in their home will benefit from the national dementia strategy. While significant sums have been pledged, most of the funds will be spent on those in need of intensive care at home. The measures include additional home help, nursing and therapy services, house adaptations, where necessary, aids and respite care, both in the home and nursing homes. Not everybody who has a need in this regard will benefit substantially.

I understand Professor Suzanne Cahill, director of the dementia services centre at St. James's Hospital, Dublin, believes these services are linked with areas with "well-known hospital overcrowding problems." This, if it is the case, is a sensible approach to deal with overcrowded hospitals, but it also means that families with similar need levels are being discriminated against owing to a postcode lottery. We also know that those with the disease at earlier ages in life are often left in the ha’penny place. There are no specialist services or supports for the estimated 4,000 people under 65 years with dementia in Ireland. This issue must be addressed. I am mindful of the recent briefing in the audiovisual room and the most wonderful insight given by a young man who is his mother's carer, a dementia sufferer in her 50s.

The Alzheimer Society of Ireland has been very active on the strategy and has requested that all parties, and all opinion in the House commit to the implementation of the national dementia strategy; provide ring-fenced funding for dementia; develop a follow-up strategy for dementia based on the review of the current strategy; ensure every person with dementia who requires home care has access to dementia specific care in his or her home; and ensure that everyone with dementia has access to a timely diagnosis and appropriate post-diagnosis support including, but not limited to, a dementia adviser as a minimum standard of follow-up support. Sinn Féin fully endorses and supports these recommendations, either in opposition or in government.

We need to plan effectively for the growing number suffering from dementia. The strategy must be implemented in full. We must examine how best to fund care and support for families and individuals affected and we must plan a follow-up strategy based on how well the current strategy has been implemented. What is the Government planning for 2018 when the strategy will end? We must also ensure the upskilling of GPs and reduce any stigma around the disease. Perhaps the Minister of State has indicated what will happen after 2018, and if not, perhaps she might like to illuminate us on it in her concluding statement.

The Government must continue to fund dementia research and to improve investment in care. Carers need to be rewarded and given every support so they can help their loved one stay in familiar surroundings, if that is their choice or the safest and a manageable option. Demographic changes and an aging population will further challenge us to come up with better treatments and care pathways to help the predicted trebling of those with dementia in the coming years. As I have said before, we must remember, it is not just about our older loved ones. In the years that come, it might very well be about any of us.


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