When people develop dementia, they often withdraw from the community they have known all their lives for fear of getting lost, confused, not recognising neighbours or not finding the correct change for groceries. Yet these daily interactions can counteract the isolation associated with dementia.
The Dementia-Friendly Communities initiative aims to keep people with dementia living at home for as long as possible by providing all kinds of community and home-based supports to help them with their daily lives.
Four Irish towns have received funding from Atlantic Philanthropies and the HSE to make their communities “dementia friendly”: across Co Mayo, Clonmel in Co Tipperary, Kinsale in Co Cork and Stillorgan/Blackrock in Co Dublin.
Eight other locations have received funding to develop personalised supports for people in the more advanced stages of dementia. These projects, which are co-ordinated by the Alzheimer Society of Ireland, are across Donegal; Galway city; Ballina/Killaloe, Co Clare; Mallow, Co Cork; Callan, Co Kilkenny; Cavan town; across Co Wicklow; and Rathfarnham in Dublin.
Tina Leonard, head of advocacy and public affairs with ASI, says, “About 63 per cent of people with dementia live in the community and their dementia has an impact on at least three family members.
“It’s the responsibility of the community that these people can live well.”
Whether you are part of a church, school, or GAA club, or are a neighbour or a friend, you have a role to play, according to Leonard.
To make a community “dementia friendly”, everyone must be involved.
This includes people with dementia, their family members and doctors as well as representatives of local businesses, sports and voluntary organisations. And it takes quite a bit of work to set up these so-called consortiums to increase awareness of what people with dementia need, and to respond by developing supports in the community.
The ASI already runs social clubs, Alzheimer cafes, and training and home supports for carers in some parts of the country.
Eilis Hession, the manager of services for older people at the HSE in Dún Laoghaire, leads the Living Well with Dementia project in Stillorgan/Blackrock.
“It’s all about reconnecting people with their communities. People with dementia are still the same people with the same likes and interests that they always had,” says Hession. Finding someone to bring the person to bridge or golf can mean they continue to engage in the social activities they always enjoyed.
“We had someone who loved walking but was no longer able to go on long hikes so the co-ordinator of the walking group arranged for someone to bring him on a shorter walk. He doesn’t remember where he has been, but he enjoys the walks because it’s something he ‘has always done’, explains Hession.
The dementia-friendly community project in Stillorgan/Blackrock also runs information sessions for carers and recently held its first community event in Kilmacud Crokes in Stillorgan. This was attended by local businesses, recreational groups, parishes, residents’ associations, voluntary organisations and councillors.
“It’s really about learning to take your time with the person and keep things as simple as possible. People with dementia find shiny tiled floors and noisy spaces difficult,” says Hession.
“They can have problems with their mobility and sight so finding parking spaces or toilets can be difficult. Opening doors into shops can also be difficult. Having good lighting in shops and demarcation lines on steps, and good-sized, clearly marked Exit and Toilet signs are things that help.”
Bridget Doyle is the project manager of the Stillorgan/Blackrock dementia-friendly community.
“Often what happens is that people are left with a diagnosis of dementia, with no real care plan in place. This project helps people link up with each other and with health professionals.
“The project has funding for three years and then it is hoped that many of the initiatives will be run by volunteers and community groups,” according to Doyle.
“The Musical Memories choirs in Deansgrange library and St Raphaela’s convent in Stillorgan are very popular. Singing is one of the faculties that stays with people longest after they have been diagnosed with dementia.”
One family member saw a huge change in her father when he joined the choir.
“It is incredibly rewarding to see him being his old sociable self, making jokes and singing harmonies. It’s like his dementia just disappears in this group.”
The choirs are part of the Dún Laoghaire-Rathdown County Council and HSE Arts and Health partnership.
Adapted physical activity classes run by the social enterprise, Siel Bleu, are also popular. These classes are aimed at helping people with dementia to continue to dress and wash themselves so that they can manage at home.
The project also offers group and/or one-to-one therapy and in-home respite to give families a break from caring for a person with dementia.
Trained volunteers help to run the choirs and other community events, says Doyle. “We have a strong group of volunteers who do one-to-one visits with people in their homes and also act as buddies – bringing people to golf or on walks or to the choirs. The key will be that local parish and community groups can take over these projects when the funding runs out.”
Ten tips for building a dementia-friendly community
Speak clearly: Giving someone with dementia time to process what you are saying is crucial, so speak calmly, quietly and slowly using short, simple sentences. Avoid direct questions. Making choices: Too much choice can be confusing for people with dementia. For example, ask the person if he/she would like tea or coffee without offering further choices around types of coffee. Body language: Smile warmly, make eye contact and use a friendly tone. Make sure you are at the person's level while respecting their personal space. Be patient: Listen to what the person has to say, without interrupting and finishing the sentence. Allow them time to find the words to tell you what they want to say. Noise and lighting: Background noises can be very distracting. Reduce unnecessary noise or move to a quieter area if necessary. Similarly, turn up lights or move to a well-lit area if necessary. Help with handling money: Counting money, calculating and handling change, and recognising banknotes and knowing the value of money can all be very difficult for someone with dementia. Offer to help by counting out money, giving a receipt and taking extra time at a till if necessary. Finding the way: People with dementia may need help to find their way around shops or to other local services. They may not be able to follow simple directions and may need to be guided. Feeling lost: Sometimes people with dementia feel lost or forget where they live. They may simply need reassurance, but sometimes additional help will be needed. Recognising and finding things: People who have dementia may forget why they came into the shop or have trouble finding the things they want. Reassurance is paramount and offering assistance can prevent them becoming distressed. Every day can be different: For some people with dementia, what they can do for themselves can change from day to day so how you help them may need to be different every time you see them. Look out for signs and offer help when needed.
Adapted from livingwellwithdementia.ie. See alzheimer.ie. Helpline: 1800 341 341.