Government urged to invest €21 million in community supports and services for dementia

The Alzheimer Society of Ireland (The ASI) is calling on the Government to invest €21.3 million in vital community supports, care services and social protection to meet the growing needs of thousands of people across the country.

The recommendations are contained in The ASI’s Pre-Budget Submission 2024 Dementia Can’t Wait – Dementia Supports to Empower Lives, which calls for State investment to address difficulties in meeting a rising demand for dementia services.

The document highlights the demand and need for:

€2.3 million for dementia-specific day services, including Day Care at Home and Weekend Activity Clubs

€10 million for Dementia Home Care

€2.2 million for therapeutic support and education of family carers, including education, training, professional counselling and psychotherapy

€5.2 million for Enhanced Dementia Care including: at least one Clinical Dementia Nurse Specialist role per acute hospital, a minimum of one Memory Assessment Support Service (MASS) per 150,000 of population and a €1m investment in Dementia Research.

The launch of the submission was accompanied by the announcement of initial findings of The ASI’s 2023 National Survey – User Experience of Dementia in Ireland (carried out in May-June 2023), which found that 38% of Dementia Carers are struggling with their caring responsibilities and that 27% of people living with dementia feel lonely often.

43% of carers reported that they have visited a healthcare professional in the last month on account of their own health. 43% rated their mental health, and 34% their physical health as ‘Poor / Fair‘.

63% of families in receipt of Home Care said they have experienced a reduction or delay in Home Care due to a staffing crisis. Many are regularly receiving significantly fewer hours than they are allocated as there are not enough staff to deliver them. Similarly, families in certain areas cannot receive any Home Care as there are no staff available.

The ASI’s Head of Advocacy, Research and Public Affairs, Cormac Cahill said demand for dementia services is growing and Home Care is in crisis – which places an urgency on Government to address these needs in Budget 2024.

“The ASI is urging the Government to honour the Programme for Government, the National Dementia Strategy and to bring the Model of Care for Dementia in Ireland from paper to practice. There is a huge geographical inequality in dementia-service provision in Ireland. It’s a postcode lottery.

“Approximately two-thirds of people with dementia live at home and their quality of life is greatly impacted by availability of community supports. We really appreciate the support that we have received from this Government (and a very positive relationship with Minister Mary Butler who has been a champion of the needs of people affected by dementia) and our funders, but the truth is that more funding is now required to meet growing need and to ensure that people living with dementia and their families are not short of vital services.”

The inequity in services was further highlighted by Kathleen Farrell, who is living with Lewy Body Dementia, and said: “Everybody should be entitled to the same support no matter where they are in the country. We should be able to stay in our own homes if that is what we want. Time is not our friend; we cannot wait any longer”.

A further recommendation is a €1.6 million investment in Pay Equity for Dementia Workers as ASI teams, which provide the majority of dementia-specific services, receive less favourable terms than public sector workers in comparable work, leading to recruitment and retention issues.

Finally, the submission highlights a need for Adequate Social Protection for Dementia Carers including to:

Increase the Carers Allowance by a minimum of €27.50

Make Carers Allowance a qualifying payment for the Fuel Allowance

Recognise the costs of caring in the allowable deductions for Carer’s Allowance, including medical expenses and fuel, and assess income on net value.

The value of Dementia Carers’ work to the State is estimated to be in the region of €804 million per annum.

In conclusion, Mr Cahill said: “The need for dementia-specific services is growing – not only among existing service users – but also among those who have not previously been in contact. Too many people affected by dementia face unmet demand for places, reflected in extensive waiting lists and requests for additional hours. Our Pre-Budget Submission is calling for the resources to meet this ever-increasing demand.”

Summary

In Budget 2024, The ASI is calling on the Irish Government to invest €21.3m in infrastructure and community supports for people affected by dementia including:

€2.3 million – for Dementia Specific Day Services, including Day Care at Home and Weekend Activity Clubs

€10 million – for Dementia Home Care

€2.2 million – for Therapeutic Support and Education for Family Carers

€5.2 million – for Enhanced Dementia Care including Dementia Nurse Specialists, the Model of Care for Dementia and Dementia Research

€1.6 million – for Pay Parity for Dementia Care Workers

Adequate Social Protection for Dementia Carers.

The ASI’s Pre-Budget Submission 2024 can be downloaded at this link.