‘Sometimes people just want to vent – he was 60, he had dementia, he was angry’
While social supports for this illness has improved, they still fall short of what is needed
A report, on behalf of the Alzheimer Society of Ireland and published this year, highlights how important it is for people with dementia to feel connected to their local community. File photograph: Getty Images
The lack of a national network of services and supports to enable people to live well with dementia in Ireland is well recognised, but there are local community groups and charities stepping in to fill the gap around the country and providing great examples of what can be done to keep people in their homes and communities for as long as possible.
When someone receives a diagnosis of dementia, life can suddenly become scary, lonely, isolating and very uncertain. While early intervention with the services is very important to help equip the person with dementia and their family to live as well as possible, in many cases the services are woefully deficient or simply not there at all.
In recognition of this gap in services, St Luke’s Home – a long-established charity caring for Cork’s older population – set up a new free community dementia service. The new service offers a vital single point of contact for people living with dementia and their families at any stage following a diagnosis of dementia, right up to end of life.
“Over the years, we have seen the struggle that families are coping with and unfortunately, a lot of admissions to nursing homes are crisis-led,” says clinical nurse manager and dementia specialist Eileen O’Keeffe. “There’s a lot of avoidance of thinking about the future, most people are just coping on a day-to-day basis with the many challenges that dementia can bring.
“We wanted to set up a service that was easy to access. You don’t need a medical card, there are no forms to fill in and you don’t have to be over 65. You just pick up a phone and call me – 021-435 9444 – and we look at where you are in your journey and what your needs are. This can be anything from help filling out forms to advice on how to communicate with a loved one with dementia.”
I’m very careful in the language I use and I’m very honest with the person
Having headed up the dementia unit at St Luke’s Home for many years before taking up her current role, O’Keeffe has a deep understanding of the needs of people with dementia and a unique skill at communicating with them at whatever stage they are at.
“I visit people in their homes and try to learn as much as I can from the family . . . about the person before their diagnosis. I’m very careful in the language I use and I’m very honest with the person,” she says.
“I go with the language they use. One man I visited was very angry and aggressive, very fed up. I asked him if he got pissed off and he said he did. Sometimes people just want to vent – he was 60 and he had dementia and he was angry about it. I agreed with him that it must be hard to accept help from other people and I wouldn’t like having services coming into my home, but explained that if he lets them in, he could continue to live at home for longer. It’s about developing a new trusting relationship with people.”
While there is no doubt that a diagnosis of dementia is devastating, O’Keeffe says it’s time to change the narrative and look at how we can help support people with dementia and their families to live as well as they can.
She points to the sense of futility around the illness because people “don’t get better” from dementia. “It’s not unusual to hear somebody say, ‘your Dad was a great man’ when he’s still alive. We need to change the whole conversation in the media and general public around dementia, starting with our language. How could you feel hope or be positive . . . when people use terms like, ‘the long goodbye’ and ‘the living death’ to describe dementia? With other life-limiting conditions, we talk of bucket lists and making the most of the time you have. We need to really look at how we can help people and their families to live as well as they can in spite of dementia.”
As well as the new community dementia service, St Luke’s provides family training courses covering a range of topics from communication to legal issues. These include a Living Well with dementia programme for people who have been recently diagnosed with dementia. It is focused on maintaining independence for as long as possible, dementia support groups and a popular monthly memory cafe.
“We started the memory cafe in our daycare centre as a social get-together where the person with dementia and their carer or family member can enjoy coffee and nice cakes while listening to music. They meet with people in a similar situation and provide support and advice to each other. It’s a safe space run by trained volunteers where everybody is accepted and I am there to give advice if needed.”
When Tom McCann saw the need for a daycare centre to keep older people in their own homes for as long as possible in his local community of Claregalway, Co Galway, he decided to do something about it.
By harnessing the support of the community, he and a small board of management have established a thriving daycare centre and this summer a new day centre will open its doors in the village, as well as 14 homes for older people.
As a dementia nurse adviser for Western Alzheimer’s and the son of a mother who had dementia, Tom has a unique insight into the vital role such local services play in the lives of people with dementia and their families.
“Living in Claregalway, I saw the need about six years ago for a daycare service . . . We set up a community project and thanks to the phenomenal support of the local community, we got the day centre up and running.”
It’s a very active day centre . . . families have been able to keep older people in their own homes longer
The massive local fundraising effort, which included setting up a charity shop in the village, was bolstered by €1,000 from the St Vincent de Paul’s Maureen O’Connell fund and a small grant from the Health Service Executive. The group renovated a derelict bungalow in the village which now accommodates 15 older people a day and employs six people.
“It’s a very active day centre . . . families have been able to keep older people in their own homes longer because they have this service, “ says McCann.
When a local farmer, whose wife had dementia, donated an 1½ acres of land to the group, they registered as a housing association for the elderly and were successful in obtaining Government funding of €1.6 million to build 14 houses for the over-65s. Building started on the site last June, with the day centre due for completion at the end of April and the houses by the end of June.
The group have partnered with Western Alzheimers, a not-for-profit group providing services and support to families affected by Alzheimer’s and dementia in the west of Ireland, so they are in a position to offer daycare places to people with dementia – from diagnosis to the most advanced stages.
“This is a model that could be rolled out around the country,” says McCann.
Wearing his Western Alzheimers cap, McCann is keen to promote a new volunteer befriending service the organisation is due to roll out in the coming weeks. “It’s not home help, it’s more of a sitting service . . . I met a man recently who is looking after his wife at home, he used to love going to the mart every Tuesday for a couple of hours, and this service would allow him to do that.”
Loneliness of living with dementia
Access to homecare support and public health nurses enables families to manage living with dementia, but the difficulties of securing these supports are a source of anxiety, frustration and loneliness, research shows.
A report, undertaken on behalf of the Alzheimer Society of Ireland (ASI) and published earlier this year, highlights how important it is for people with dementia to feel connected to their local community.
It recommends that people living with dementia should be helped participate in social activities they enjoyed before their diagnosis. This may require support from family, formal caregivers and the wider society.
The report also advises that people living with dementia and their caregivers should be given an opportunity to participate in local dementia support groups.
ASI policy and research manager Bernadette Rock says: “People living with dementia or cognitive impairment are at risk of loneliness . . . The importance of people with dementia, and indeed their carers, staying active in their own community cannot be underestimated.”
In 2018, the ASI published the results of a mapping project of public and voluntary dementia-specific services in the community, undertaken with the HSE and National Dementia Office, which revealed glaring gaps in the equity of access to services across Ireland.
ASI chief executive Pat McLoughlin says: “This is such an important area for people with dementia and findings have highlighted the lack of supports and interventions for people . . . with dementia.”
A total of 314 dementia-specific community-based services were identified across the Republic, provided by approximately 32 providers. The largest category (20 per cent) of services were dementia-specific day centres and there was a wide variance in the availability of daycare, ranging from a six-day a week service to once a month.
There were 13 counties where a vital dementia adviser service was on offer on a part-time basis
Overall, there was large variance across the country in terms of service availability. For example, counties Leitrim and Laois had only three reported services and Co Kerry only had seven of the 40 recorded dementia-specific services for Care Health Organisations area 4, with the remaining 33 located in Co Cork. This has led to a concentration of some services in some areas and a complete absence of similar services in others.
There were 13 counties where a vital dementia adviser service was on offer on a part-time basis, with the remaining 50 per cent of counties having no access at all to this type of service.
The ASI held an emergency dementia summit last November (2018) highlighting the urgent need for funds for dementia-specific supports to be included in the 2019 HSE service plan.
In their pre-budget submission 2019, the ASI called for €7.415 million for a minimum standard of community services in each county, noting that the National Dementia Strategy committed to identifying gaps in existing provision and prioritise areas for action.
They also called for €2.31 million to roll out a dementia adviser service across Ireland. Evidence has shown that this advice and support is crucial. However, there are only eight dementia advisers covering 11 counties and demand is increasing, fuelled by a growth in awareness due to the HSE’s Understand Together campaign.
The ASI provides a number of other supports and services to people with dementia and their carers across Ireland, including 51 daycare centres and one respitecare centre. The ASI also provides homecare, family carer training, dementia advisers, Alzheimer cafes and social clubs.
The ASI National Helpline is open six days a week Monday to Friday 10am-5pm and Saturday 10am-4pm on 1800-341341. alzheimer.ie
Dementia Fact Panel
- The number of people with dementia in Ireland is expected to more than double over the next 20 years, from 55,000 today to 113,000 in 2036.
- Dementia is an umbrella term used to describe a range of conditions which cause changes and damage to the brain.
- There are more than 400 types of dementia, but the most common are Alzheimer’s disease and vascular dementia.
- The disease progresses over time and there is no cure.
- The majority of people with dementia (63 per cent) live at home. More than 180,000 are, or have been, carers for a family member or partner with dementia. Many more provide support and care in other ways.
- Each year in excess of 4,000 people develop dementia. Anyone can develop dementia, even those in their 30s/40s/50s.
- One in 10 people diagnosed with dementia is under 65.