Colette Kelleher
Chief Executive of The Alzheimer Society of Ireland.
An expected 68,216 Irish people will be living with Dementia by 2021. More than 60% of people with dementia live in the community cared for by 50,000 family carers. Often they have patchy, uncoordinated or no support. Dementia care is at the forefront of the future.
The Irish health & social care system is failing to support people with dementia and their carers. This even comes down to struggling within their own homes and communities. Dementia is one of the most significant health and social care challenges facing this country today. 48,000 people currently live with the condition. If the current trend continues, the number of people with dementia will treble in a generation.
Investment needed for dementia care within Ireland
The cost of dementia care ranks higher than stroke, heart disease and cancer combined. Yet healthcare spend for dementia continues to be substantially lower than these conditions. The overall cost of dementia care in Ireland is just over €1.69 billion per annum; almost half of this substantial cost is borne by family care. Residential care accounts for 43 per cent. Formal health and social care services contribute only 9 per cent to the total cost.
People with dementia wishing to remain at home and within communities for as long as possible must be supported. 63 per cent of people (30,000) in Ireland with dementia live in the community. Long-term and investment in care should reflect this reality. High levels of care are provided in care homes. This should not be a result of inadequate community supports.
There is an Expert policy paper, commissioned by The ASI and independently prepared by Health Economist, Dr Dominic Trepel. It has revealed that home care versus long-term residential care results in better quality of life for dementia sufferers. But at approximately half the cost. The Health Economist referenced findings from a European study. This study revealed the average European cost to care for residential dementia care is €4,491 per month. Home care in comparison ins €2,491. Using this analysis, home care is almost half the cost of institutional care. However, residential support for people with dementia are uncoordinated or simply non-existent.
Person centred dementia care within Ireland
Dementia-specific home care is person-centred, consistent and involves continuous care. This must be provided by dementia trained staff in partnership with the person with dementia and their family carer. Similarly promoting independence and inclusion.
By empowering the person with dementia and their family members, appropriate home care help. Dementia patients require properly trained care staff. The care can be less about spending quality time and enabling the person and more about carrying out specific tasks. This creates a dependency, and does little to promote independence. This can end up further increasing the challenges people face when living with the condition.
Many people with dementia in fact unnecessarily end up in hospital in costly crisis driven interventions which could have been avoided if the correct supports were in place in our communities.
Ongoing home dementia care
As the precipitous rise in the incidence of dementia continues unabated, the Government must act with urgency to afford people with dementia the basic human right of living in their own homes and communities for as long as possible. Staying at home should after all always be a viable first option for a person with dementia. However, currently a diagnosis of this difficult condition is worsened by the ensuing struggle to access quality care and support post-diagnosis.
Here at The Alzheimer Society of Ireland our Irish Dementia Working Group is not only working tirelessly to banish the prevailing stigma surrounding dementia, but is also lobbying for better supports in the communities.
Chair of The ASI’s Irish Dementia Working Group, Helen Rochford Brennan, who has Early Onset Alzheimer’s, said: “ I am part of the 63 per cent of people with dementia who live at home, and as part of the community, I should have access to supports that will help me to remain there. I was diagnosed at the age of 61 there were no services tailored to help someone my age which left me isolated and afraid. There is simply no ward like home. We urge the government to support change for dementia.”
Our vision is in essence a community that respects, supports and empowers people with dementia, a community in which people with dementia are socially and culturally valued; a community where people with dementia still actively participate in a safe environment. However, they need adequate supports to be able to do this. Political will and leadership are needed to ensure there is a strategic approach to dementia care in this country.