Living as well as possible with dementia as opposed to suffering is the guiding philosophy of Carebright which is developing Ireland’s first dementia hub in Bruff, Co Limerick, based on a model first established in the Netherlands.
Building work on the hub starts this summer and it’s expected to open in September 2017.
Carebright, established in 1998, started as a community services programme in Hospital, Co Limerick, providing home help. Twelve years ago, the company, through the HSE, became a provider under the home-care package, covering Limerick, north Tipperary and north Cork.
"Over 60 per cent of our clients would have some form of dementia," says Colette Ryan, general manager of Carebright. "In east Limerick, where we're developing the hub, our clients were managing at home but then when there wasn't family support and they were deemed unable to live independently or safely, they were moved into nursing homes."
‘Social economy business’
The idea for the dementia hub came from Carebright’s training manager and its care managers who are managed by nurses. As Ryan says, it is “a social economy business with a voluntary board. We want to give back to the community. A lot of our clients were moving into nursing homes. That’s fair enough. They can be great for people. But we feel there are clients who are very mobile and healthy. They were going into nursing homes, not doing their daily activities, just sitting down. Their quality of life really diminished.
“Some people, in the latter stages of dementia, need a nursing home. But we wanted to do something different for our other clients, who can live relatively independently. Dementia is an epidemic, really.”
According to Avril Easton, project leader from Dementia Friendly Communities, which is managed by the Alzheimer Society of Ireland, "Some 63 per cent of the 55,000 people with dementia are living in our communities and, in the main, people wish to remain in their own homes for as long as possible.
“However, when this is not possible, a dementia hub offers an alternative, whereas in the past, this has mainly been a residential care setting. We need an alternative for people to suit their needs at their particular point in their dementia journey.”
With people living longer, it is estimated that the amount of people in Ireland with dementia is set to treble in a generation.
The dementia hub planned for the village of Bruff “is effectively three bungalows”, says Ryan.
“In each bungalow, there will be six separate units. The idea is that a client goes into their own little apartment from where they can see their private garden and patio. There’s a sitting room and an en-suite bedroom. From the garden, the client can go out into the farm. There’s also an orchard, a community garden and a sensory garden.”
There will be a communal kitchen including a “break-out area” that clients can relax in. There will be house parents in the hub, helping with the kitchen activity. The house parents, who will be clinicians, will not wear uniforms.
“There can be hostility from dementia clients towards people working and wearing uniforms. Obviously, the clients will get to know the clinicians but for visitors on site, they won’t be able to differentiate them from the others.”
Ryan stresses the importance of the clients maintaining their independence, “doing the normal things in life, like making breakfast, putting on a wash, making your bed. It’s not ground-breaking stuff. These are small things.” But they add up to leading as normal a life as possible.
The hub will include a cafe which will welcome people from the area. “It will be a form of day care that will be open at weekends to give family carers a break. It doesn’t have to be people living with dementia who can use it. It can be for our other clients who can be very lonely at weekends.”
‘Dementiaville’
Two years ago, Ryan visited Hogewey in the suburbs of Amsterdam, the world’s first village for dementia patients. It has been dubbed “Dementiaville”. It was first mooted over 20 years ago amid opposition from critics who questioned the plan to allow dementia patients live without locks, with minimal medication, in their own homes, doing most of the things they did before illness, such as shopping and going out to the theatre.
“When I went to Hogewey, it was a bank holiday and a miserable day. But people were out and about, doing gardening whereas in Ireland, people with dementia were all sitting inside in a kind of cosseted environment. This was different. People were healthier looking and were active.
“We’re taking it as a model but you can’t replicate everything. There are cultural differences but Hogewey is the framework we are using. We hope that what we’re doing will be replicated.”
The Carebright dementia hub, which doesn’t yet have an official name, will cost €4.85 million to build. The funding will come from Carebright, the Department of Health and the JP McManus Foundation with support from the Social Innovation Fund. Fundraising from the public will also be necessary.
Ryan hopes that clients will qualify under the Fair Deal scheme, paying for residence in the hub in the same way that people in nursing homes cover their costs.
Carebright's business development manager, Majella Murphy, says dementia isn't just an old-age related disease. "There's about 4,500 people under the age of 65 who have dementia." The youngest person in the world to be diagnosed with the condition is aged 28.
“Early diagnosis is key,” says Murphy. “Right now, we’re being reactive rather than proactive. Through the National Dementia Strategy, there is work being done in the background to ensure people are diagnosed much earlier on.”
Care and respite
While the dementia hub is a new concept in Ireland, seven Dementia Friendly Communities have been established including Wicklow Dementia Friendly which gives older people a voice in decision-making processes at local, regional and national levels. Another example is the Ballina/Killaloe Dementia Friendly Community which provides day care and respite facilities at Waterman’s Lodge.
An increasing number of businesses are backing a pilot project in Wicklow, educating retailers about dementia, by placing a Wicklow Dementia Friendly sticker on their shop fronts.
The Alzheimer Society of Ireland, Dublin City University and the HSE will jointly hold a showcase of dementia-friendly activities and projects from across the country in late September at the Helix Theatre, Ballymun, Dublin.
For more information about Dementia Friendly Communities, see alzheimer.ie or call 1800 341 341.
'If you notice someone looking lost or distressed, offer to give them assistance'
Tips for retail and services staff when interacting with a person with dementia:
Speak clearly. Use short simple sentences allowing the person time to understand and respond.
Smile warmly, make eye contact, use a friendly tone and respect personal space.
Listen carefully to what the person is saying, giving plenty of reassurance that you understand what it is they need or want.
Limit choices. While choice is good, for a person with dementia, too much choice can be confusing. Keep choices to a minimum and, if necessary, describe the options available to them.
Handling money can be tricky for a person with dementia. Give the person extra time to complete the transaction and always provide a receipt.
A noisy environment and items being moved around in stores can cause a person with dementia unnecessary confusion. If you notice someone looking lost or distressed, offer to give them assistance.
