Just 20% of people with Dementia have care needs met
A third of people living with dementia said they are unable to access the services they need, while a further half say they are only able to access some of the services they need.
That’s according to a new report – one of the largest carried out on the experience of dementia in Ireland – launched today by the Alzheimer Society of Ireland (The ASI).
The report The Experience of Dementia in Ireland: A Snapshot in Time found that just 20% of people living with dementia were able to access all of the services they need.
The major shortfall was similar among carers with 26% saying they do not have access to the services they need, 52% reported only having access to some services, while just 12% said that their needs were being met.
The research – giving a comprehensive insight into people’s lived experiences – was carried out in early summer 2023 on a base of almost 670 people, including both carers and people living with dementia.
The findings have prompted The ASI to call for the publication of a detailed and multi-annual implementation plan for the new HSE Model of Care for Dementia in Ireland plan, which was published last May.
The ASI’s Chief Executive, Andy Heffernan, said the report makes for stark reading and while he acknowledged the enhanced investment from Government in dementia-specific services and supports in recent years, he said this was against a backdrop of historical under-funding, rising prevalence and a growing need.
“This timely report captures the experience of living with dementia in Ireland in 2023, the multi-faceted and complex challenges of the condition have been laid bare. It is very clear that the issues people are grappling with regarding isolation, burnout, mental and physical health issues, and ever-increasing financial pressures are having a huge impact.
‘‘Last week’s announcement regarding funding for Memory Services across the country is a very welcome first step in implementation of the Model of Care for Dementia in Ireland and evidence of this Government’s commitment to people affected by dementia. We need continued and increased investment and a comprehensive implementation plan to ensure the Model of Care moves from paper to practice.’’
Other findings in the report included:
- Accessing home care is a particular struggle – with respondents highlighting large discrepancies between hours needed, hours granted and hours received
- Not enough access to day services, and many who attend day centres are seeking additional hours
- A home care staffing crisis with recruitment and retention a significant obstacle due to unequal pay and conditions between the HSE and non-profit sector (63% experienced a delay or a reduction in home support due to the shortage of home care workers).
- A major financial challenge for carers as many have reduced their working hours or left their work to provide care. 50% of carers reported having difficulty making ends meet.
- A lack of transport is a barrier for 21% of carers and 27% of people with dementia in attending services, and a particular issue in rural areas.
The report also showed the significant health and emotional strain on people resulting from the shortage of services:
- 58% of respondents with dementia rated their physical health as below average, and 31% rated their mental health as poor
- 55% of respondents with dementia said they had felt lonely in the past week
- 34% of carers reported below-average physical health, and 43% reported below-average mental health
- 43% of carers had visited a healthcare professional in the past month on account of their health.
Member of The ASI’s Dementia Research Advisory Team and Dementia Carers Campaign Network Tony McIntyre said: “This report is important because we need to hear from people living with dementia and people like me who are dementia carers. I am very glad that there is a record of our experiences and I hope the information will be used to improve services.
“My life changed for the better, and my ability to support my wife, Mary, improved so much after completing The Alzheimer Society of Ireland’s Family Carer Training. This report shows that many other people are in need of this and other vital services. Mary and I are really proud to be members of the Dementia Research Advisory Team and work hard to support research that can help everyone affected by dementia.”
A significant need for greater access to dementia day care and home care is illustrated throughout the report. Further specific recommendations included:
- Increase services that provide companionship, stimulation and support to the person living with dementia with the dual benefit of providing respite to carers (such as Day Care at Home, befriending and home support)
- Invest in free psychotherapeutic services for people living with dementia and carers to address deteriorating mental health, including counselling services and facilitated support groups
- Standardise home care rates of pay and benefits and introduce meaningful career progression opportunities to address the care staffing crisis.
The report’s lead author and The ASI Research and Policy Manager Dr Laura O’Philbin said the research highlighted an accumulation of challenges faced by people living with dementia and carers.
“Difficulties accessing services combined with financial challenges, declining health, loneliness and stigma have created an unsustainable and devastating trajectory for people living with dementia and their families.
“Action and investment in services and support can help to ease the journey and ensure that people can live as well as possible for as long as possible. We visited Memory Cafes, called to local services, spoke to people on the phone, passed out flyers and harnessed the power of local radio and social media. These recommendations have been developed after hearing directly from people affected by dementia. We must act urgently to implement them.”
Ronan Cavanagh, Cavanagh Communications: (086) 317 9731 / email@example.com
NOTES TO THE EDITOR
The Alzheimer Society of Ireland
A national non-profit organisation, The Alzheimer Society of Ireland is person-centred, rights-based and grassroots-led, with the voice of the person with dementia and those who care and support at its core.
- There are 64,000 people with dementia in Ireland and the number of people with the condition will more than double in the next 25 years to over 150,000 by 2045.*
- There are 11,000 new cases of dementia in Ireland each year. That’s at least 30 people every day and anyone can get dementia – even people in their 30s/40s/50s.**
- Dementia is an umbrella term used to describe a range of conditions which cause changes and damage to the brain.
- Dementia is progressive. There is currently no cure. Dementia is not simply a health issue, but a social issue that requires a community response.
- The majority of people with dementia (63%) live at home in the community.
- Over 180,000 people in Ireland are currently, or have been, carers for a family member or partner with dementia with many more providing support and care in other ways.
- 1 in 10 people diagnosed with dementia in Ireland are under 65.
- The overall cost of dementia care in Ireland is just over €1.69 billion per annum; 48% of this is attributable to family care; 43% is accounted for by residential care; formal health and social care services contribute only 9% to the total cost.
Figures referenced to Cahill, S. & Pierce, M. (2013) The Prevalence of Dementia in Ireland
*Figure referenced from Alzheimer Europe (2020) Dementia in Europe Yearbook 2019 ‘Estimating the prevalence of dementia in Europe’
**Figure referenced from Pierce, T., O’Shea, E. and Carney P. (2018) Estimates of the prevalence, incidence and severity of dementia in Ireland.
Pre-Budget Submission 2024
In its Pre-Budget Submission 2024 The Alzheimer Society of Ireland (The ASI) called on 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 submission can be read at this link. The submission Dementia Can’t Wait – Dementia Supports to Empower Lives highlighted the 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 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 Dementia Carers Campaign Network
The Dementia Carers Campaign Network (DCCN) is a group of people who have experience caring for and supporting a person living with dementia. Set up in 2013, the group aims to be a voice of, and for, dementia carers in Ireland and to raise awareness of issues affecting families living with dementia.
The group is facilitated and supported by The Alzheimer Society of Ireland, and there is a committee of current and former carers who take responsibility for driving the work of the network. Members of the network meet online and in person to have their voices heard and influence dementia policy and practice in Ireland.
The Dementia Research Advisory Team
The Dementia Research Advisory Team is a group of people living with dementia and carers/supporters who are involved in dementia research as co-researchers. These Experts by Experience influence, advise, and work with researchers across Ireland. Their work is defined as Person Public Involvement (PPI) whereby members work in partnership with researchers from the outset of a project right through to disseminating findings.
Cavanagh Communications I OfficePod 18, 6-7 Marine Road, Dun Laoghaire, Co. Dublin, Ireland. A96 R2N4.
Media Relations I Public Affairs I Communications Management I PRII Awards: Winner 2014 & Finalist 2022 & 2015.