The Government has been urged to create a ring-fenced budget in October to tackle the growing gaps in services for people with Alzheimer’s disease and dementia.
"Emerging gaps in the supports and services for people with dementia and their families across Ireland" were identified in the Government's mid-term review of the National Dementia Strategy published in May, the Alzheimer Society of Ireland has noted.
About 55,000 people are living with dementia in the State and the figure is expected to double to 115,426 within 20 years, and almost treble to 157,883 within 30 years. Eleven people a day receive a new diagnosis.
There is a €28 million overall budget to implement the National Dementia Strategy which was announced by the HSE in 2014. Just over €21 million will be spent by the end of 2018.
Homecare packages
The provision of dementia-intensive homecare packages makes up the biggest chunk of that budget, more than €14 million by the end of 2018 and €22.1 million over all. These were introduced “to test the feasibility of providing a high level of support to people with dementia with complex needs to facilitate them to remain living at home”. Just over 300 people have benefited from the packages so far.
An additional €3 million was allocated to the homecare packages by the Department of Health this year. This was to replace the original Atlantic Philanthropies investment, to ensure continued delivery of the service. An evaluation of the effectiveness of the homecare packages is also being carried out.
Early-onset dementia
But campaigners and advocates highlight a lack of service provision in some areas, including for some people diagnosed with early-onset dementia who may not avail of certain services because they are only available to over 65s.
Kathy Ryan was diagnosed with Alzheimer's 4½ years ago. She is just 58. She is a member of the Irish Dementia Working Group, interacting with professionals and others to help develop postdiagnostic support pathways.
It is not, she emphasises, an old person’s disease,as is commonly thought.
“For me, some of the basic things that are very wrong in this country is, number one, that Alzheimer’s is not recognised as a long-term illness. I am diabetic as well and I can get what I need on the medical card for my diabetes, but not for my Alzheimer’s. But Alzheimer’s is going to kill me; if I control my diabetes it isn’t,” she says.
“I have spoken to people around this country who have been diagnosed and told to get their affairs in order and [given] no information whatsoever. That information needs to be tailored to the situation you are in.”
“What I needed when I was diagnosed didn’t exist. There are eight dementia advisers in this country covering 13 counties and if you are not in one of those counties, tough. I am not entitled to services until I am 65 and have been refused a grant for a panic alarm because I am living on my own.”
Recently, Ms Ryan met a man of just 47 with Alzheimer’s. “What does he do until he’s 65?” she asks.
Mid-term review
The Department of Health’s mid-term review of the strategy said the health and social care system will need to respond with “more flexible and person-centred services and supports that address the needs of the growing number of people with dementia”.
“The aim of the strategy is to improve dementia care so that people with dementia can live well for as long as possible, can ultimately die with comfort and dignity, and can have services and supports delivered in the best possible way,” it says.
The document said the department recognised that full implementation would require further investment .
“It must be recognised, however, that health service resources are finite and it will be difficult to obtain resources on the scale that is needed,” it added.
Alzheimer Society of Ireland chief executive Pat McLoughlin said the mid-term report concluded that additional funding was required to establish new dementia services and structures across the country.
Specific response
In its recent pre-budget submission, the organisation was “simply calling on the Government to implement [its] own recommendations”.
“The Government needs to accept that the scale of dementia needs a specific response and a specific budget that is ring-fenced and targeted to where the greatest need exists for services. A multi-annual budget would allow the real gaps which are emerging in service provision to be dealt with in a planned way, based on need and heavily influenced by persons with dementia and their carers. We are determined to ensure that dementia is taken more seriously and resourced properly in Budget 2019.”
Case study: “There’s very little support in Limerick for carers”
Rachel McMahon, of the Dementia Carers Campaign Network in Limerick, first became a carer in 2005, when her father, Tony, a sports broadcaster, was diagnosed with Alzheimer’s.
She gave up studying journalism in Griffith College and moved home to help look after him. She says she had to accept that the diagnosis changed the family’s circumstances.
“He was 58 years of age and I was a student, I was in college in Dublin. I chose to leave and come home and help care for him because we didn’t really know what to expect and we thought we needed to be around, just in case. His mood became erratic and he wasn’t allowed to drive. He couldn’t make a sandwich or fix himself a cup of coffee or anything like that.
“After the diagnosis there was a fairly swift decline and it was sort of a plateau for a while and then it would go down again after six months. We were always monitoring how he was and how it would change.”
‘Non-stop’
“It was just non-stop. In terms of services, he couldn’t go to old age psychiatry which deals with a lot of people who have some sort of dementia, because he wasn’t over 65. That’s the situation around the country.”
Her father was eventually cared for full-time in a nursing home. He died in 2012.
Rachel’s family is now experiencing similar issues getting supports for her grandmother, who was also diagnosed with dementia. She says more dementia advisers are badly needed, as is “signposting” of services for people newly diagnosed.
“There’s very little support in Limerick for carers. And there’s a knock-on effect. If you are not looking after the person with dementia and providing supports and resources, it affects the people who are caring for them. They get physically sick, they have mental health issues, they are emotionally drained. They start to get really unwell and they need to keep going. They struggle then as well and they need supports and services.”