Mary Butler (Waterford, Fianna Fail) | Oireachtas source

I move:

“That Dáil Éireann:

notes that:

— the World Health Organisation has described dementia as one of the most serious social challenges facing the world today;

— dementia is a life-changing condition both for the person and for their family;

— age is the main risk factor for dementia and as a result, the population of those living with dementia will grow exponentially over the coming years as Ireland’s population ages;

— approximately 55,000 people in Ireland are currently living with dementia;

— for every one person with dementia, three others are directly affected;

— one in three people aged over 65 will develop dementia;

— it is estimated that the number of people with dementia will double in the next 20 years and treble in the next 35 years;

— there are an estimated 4,000 people aged under 65 in Ireland living with younger onset dementia;

— it is estimated that half of people with dementia never receive a diagnosis;

— the majority (63 per cent) of people with dementia live at home;

— the annual cost of dementia is €1.69 billion per annum, 48 per cent of which is attributable to family care;

— people with dementia have the same human rights as every other citizen, but in addition to the impact of the condition, they face cultural, social and economic barriers to fulfilling these rights;

— insufficient provision for home help and home care packages channel people to long-term care, causing the institutionalisation of people with dementia;

— people with dementia are high users of health and social care services;

— some 25 per cent of people in acute hospitals are living with dementia and it is estimated that 89 per cent of people in long-term residential care have dementia;

— hospitalisation is associated with functional decline among people with dementia;

— while people with dementia access care and support through disability, mental health and neurological services, the majority of people, if they receive care and support, do so through older person’s care services; and

— people with dementia have a preference to remain living at home for as long as possible and, with the right support, this is possible for the majority;

acknowledges that:

— Ireland’s first National Dementia Strategy was launched by the Government in December 2014;

— the Department of Health and the Health Service Executive (HSE) have allocated €14.7 million in matched funding to a grant from Atlantic Philanthropies, generating a combined total of almost €30 million to implement three key areas of the National Dementia Strategy — intensive home care supports, GP education and training, and dementia awareness;

— a National Dementia Office has been established within the HSE as part of the National Dementia Strategy Implementation Programme;

— a Charter of Rights for People with Dementia highlighting the specific rights of people with dementia has been published by the Alzheimer Society of Ireland and Irish Dementia Working Group;

— in 2012, the World Health Organisation and Alzheimer’s Disease International issued a report explaining that dementia must be treated as a global public health priority as the condition affects more than 35 million people worldwide;

— a G8 (now G7) Dementia Summit was held in London in 2013, leading to the establishment of the World Dementia Envoy and World Dementia Council; and

— the World Health Organisation hosted the first ever Ministerial Conference on Global Action Against Dementia in Geneva in March 2015, leading to the creation of a Global Dementia Framework; and

calls for:

— progressive increases in investment towards home care supports for people with dementia in forthcoming Budgets, so as to meet the needs of people currently living with dementia in the community, and to provide flexible, individual needs-led health and social care services;

— aspects of the Nursing Home Support Scheme to be examined for home care (such as the standardised process for assessment), certainty of entitlement and centralised, multi-annual, ring-fenced funding;

— strategic and long-term planning for investment in dementia, including ring-fenced funding for dementia;

— adequate resources to ensure full implementation of the National Dementia Strategy;

and

— the development of a revised and reformed dementia strategy that prioritises dementia care support in communities and within the home.”

I am pleased, as both my party's spokesperson on older people and public health promotion and as chair of the all-party dementia committee, to table this motion and I thank my party colleagues for agreeing to make the time available for us to discuss it this evening. I understand too that the Government has accepted the motion and I welcome that. I am hopeful that Members from all political parties and none will support this motion.

This is an issue on which we need to build the broadest possible consensus. We need to make a strong and united stance in support of people living with dementia. The 2012 report, Future Dementia Care in Ireland, published by academics in TCD and NUIG, states in its introduction that, "Since the turn of the millennium, dementia has not simply stepped onto the national stage, it has, metaphorically speaking, put on its running shoes and sprinted into the very centre of the policy, service and research arena, taking every opportunity along the route for its messages to seep into the public consciousness."

As the motion points out, the World Health Organization has described dementia as one of the most serious social challenges facing the world today. Dementia is a life-changing condition both for the person and for his or her family. This motion will rightly put the spotlight on what supports are needed for people living with dementia and where we feel the Government must step up its service to ensure that every person living with dementia has the best possible quality of care and, above all, quality of life. Age is the main risk factor for dementia and, as a result, the population of those living with dementia will grow over the coming years as our population ages. Approximately 55,000 people in Ireland are currently living with dementia and for every one person with dementia three others are directly affected.

Dementia can be extremely challenging for family care givers and the helplessness associated by many with advanced dementia brings with it a fear and a stigma which make living with dementia even worse. It is essential that people living with dementia remain connected with their family, friends and local communities to reduce social isolation and loneliness. Dementia should not mean people stop doing the things they love, but as times go by they might need support to do so. One in three people aged over 65 will develop dementia and it is estimated that the number of people with dementia will double in the next 20 years and treble in the next 35 years. The majority of people living with dementia are women, although of the some 4,000 people with an early onset diagnosis, most are men. Those with younger onset dementia quite simply feel that there is nothing out there for them and there needs to be more appropriate supports put in place for people under 65.

These figures do not include an additional approximately 700 people who have Alzheimer's type dementia associated with Down's syndrome. Approximately 4,000 new cases of dementia arise in Ireland every year and there is significant regional variation in estimated prevalence rates. It has been estimated that the overall cost of dementia in Ireland is just over €1.69 billion per annum, with 48% of these costs attributable to the opportunity cost of informal, mostly family, care to those living with dementia in the community. A further 43% of costs are accounted for by residential long-stay care while formal health and social care services contribute to only 9% of the total costs of dementia. It is also estimated that half of those with dementia never receive a diagnosis. Diagnosis is still a major issue and people are either not getting diagnosed or it is delayed, which impacts on treatment and services.

Under the current national dementia strategy there are new GP training and HSE awareness programmes, but more could and should be done. Dementia awareness and education is a key intervention. It is only through greater awareness about the impact of the condition that people can live well in their communities and the stigma of dementia can be broken down. Nearly two thirds of people with dementia live at home in the community and that is where they and their families would prefer them to be. People with dementia have a preference to remain living at home for as long as possible and, with the right support, this is possible for the majority. The current national dementia strategy commits to providing 500 home-care packages. However, only 72 people are in receipt of home-care packages under that strategy. The question is when this will be rolled out in full.

People with dementia are high users of health and social care services. They also have the same human rights as every other citizen, but in addition to the impact of the condition, they face cultural, social and economic barriers to fulfilling these rights. Insufficient provision for home help and home-care packages is effectively channelling people to long-term care, causing the institutionalisation of people with dementia. Some 25% of people in acute hospitals are living with dementia and it is estimated that 89% of people in long-term residential care have dementia. Hospitalisation is associated with functional decline among people with dementia. Keeping people out of hospital and at home is cost effective and a clear preference for people so it must be prioritised.

There are also a number of obstacles that prevent people with dementia from accessing general home-care services. One of these obstacles is the inappropriate care needs assessment which fails to capture the needs of people with dementia, such as the story of the woman who can cook for herself but who forgets to eat and needs to be reminded, or the person who goes wondering and just needs someone to sit with them. There needs to be standardised needs assessment nationwide, backed up by dementia-specific training for staff. There are also inconsistencies across the country in the types of home-care services provided.

Our motion calls for progressive increases in investment towards home-care supports for people with dementia in forthcoming budgets, so as to meet the needs of people currently living with dementia in the community and provide flexible, individual needs-led health and social care services. We also want to see aspects of the nursing home support scheme examined with a view to applying them to home care, such as the standardised process for assessment, certainty of entitlement and centralised, multiannual, ring-fenced funding. Strategic and long-term planning for investment in dementia, including ring-fenced funding for dementia, should be allied to adequate resources to ensure full implementation of the national dementia strategy. It is also timely now to prepare for the development of a revised and reformed dementia strategy that prioritises dementia care support in communities and within the home. The national dementia strategy ends in 2017, so the planning of the new strategy should get under way immediately.

Dementia costs more than cancer, heart disease and stroke combined and yet, as an illness, it fails to attract commensurate political and budgetary attention. We must also remember the carers. As the World Health Organization rightly says, "dementia is overwhelming for the caregivers". As one family carer told the Alzheimer's Society for its Impact of Caring booklet last year:

Early Onset Dementia is not an illness that you contemplate in your 50s and the role of a carer isn’t straightforward or easy. Keeping life normal is the ultimate struggle. The Government needs to do more to enable people to keep living in their homes and to resource their caregivers to provide much needed care. Caring for Mam has taught me how to find my voice as a carer and to use it to fight for what she needs.

This Dáil should vote to give both the carer and her mother what she needs. I hope we will have cross-party support for this motion.

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