A County Galway woman who lost her mother to dementia is spearheading an initiative aimed at heightening awareness about the illness and empowering communities to help sufferers improve their quality of life.
The Make Connemara a Dementia Friendly Community project is the brainchild of Carmel Geoghegan, an Oughterard woman. She became an advocate for the condition after her mother Angela died three years ago from vascular dementia. She was the primary carer of her mother who began to exhibit symptoms of the disease when she was 80-years-old.
She believes there is a need for a broader understanding of dementia and end-of-life care and would like to be a voice for those diagnosed with the illness, their carers, families and communities. She is keen to facilitate discussion and reflection on the nature of living with dementia today, create opportunities for sharing of learning, profile models of good practice and highlight the need for joined up responses in policy making, planning and implementation.
She has trained as a Dementia Champion with Dublin City University and presented two workshops on the issue in Oughterard and Moycullen last year. This year she plans to organise a number of public information events as well as speaking at residential care homes and to community groups on the issue of dementia care. She plans to hold a “Living with Dementia” conference in May. She is also eager that signage in public places would take into account the needs of sufferers and that small details, such as labelling things and introducing grab rails, would make their own home lives easier and simpler.
“I feel it is important that we put, and keep, the spotlight on dementia. I gave a talk before Christmas to elected public representatives on making their communities more dementia friendly. At present approximately 50,000 people have been diagnosed with dementia in Ireland, some of those are as young as 30. A total of 5,000 - that’s 10 per cent of the overall figure - are concentrated in the west of Ireland in counties Mayo, Roscommon and Galway. This figure is set to treble in the next 20 years. Dementia is the umbrella term used for a range of symptoms, which manifest in a decline in intellectual functioning caused by degenerative disease of the brain. The most common form is Alzheimer’s disease followed by vascular dementia, Lewy Body Dementia, Fronto-temporal Lobe Dementia and Pick’s disease.”
Ms Geoghegan says there are a number of ways in which businesses can recognise and help the growing numbers of people with cognitive impairments. “As part of the workshops I ran last year I showed a DVD about the importance of suitable signage in various facilities. For instance, in a bar you might see a sign marked M or W over the toilet doors. Someone with cognitive impairment won’t have a clue what that means. Equally shiny floors are very confusing as they think they are wet. If doors and walls are painted white they can’t see the door, it needs to be in a different colour. In shops you find everything in the aisles is changed fairly often and that makes it very difficult for some people. Little things can make a big change, for example a member of staff in a hospital changed the grab rails to red and that made it easier for people.”
Initiatives being introduced in some residential care facilities can help residents greatly too, she says. “A manager of a daycare centre got funding for two iPads. One resident who is from Co Clare sometimes wants to go there and gets very distressed when she can’t. Now she can look on Google Maps and see her own street and this settles her.”
Ms Geoghegan wants people to be empowered to be able to stay in their own homes as long as they capable or wish to remain there. “Small changes can make a big difference, such as putting labels on things, getting glass doors on presses, instead of wooden, therefore enabling people to see the contents. It is also important for them to write down their wishes (after they have gone ) and not rely on family members.”
She discussed her idea for a Dementia Friendly Community initiative with her late mother before she passed away on January 12 in 2014. “I had been talking about it with mom, about the need to fight for better support for carers and families, and the need for education. I was spurred into action by the lack of awareness about the condition and the ignorance around dementia in the community. Banks, shops, medical staff and neighbours did not understand. There is a lack of knowledge and late, or oftentimes no, diagnosis. People often are not being sent for MRIs or tests. Medical staff cannot put this down to the ageing process. People who have the condition can be withdrawn and frightened and often try to camouflage it. The big thing is being prescribed anti depressants and if they are not pulling up their socks, the dose is upped.
“When I go to active retirement groups I tell them to look after their diet and brain health. Get away from the TV and make sure they are doing something stimulating. Do jigsaws, interact with people, audio books are fantastic too.”
She emphasises the importance of raising awareness about dementia and keeping the issue in the public eye.
“The more we talk about it, the more money will be put into seeking a cure. Once cancer was not spoken about or else it was mentioned in hushed tones and referred to as the Big C. Now the issue is out in the open. We need to do this with dementia. People should not be afraid of it or of getting tested, there is life after being tested. People should not be embarrassed about contacting the Western Alzheimers’ Association or the Alzheimer Society of Ireland. The latter group has a mobile information unit which visits various areas and I hope to get it to come to Galway.”
• Carmel Geoghegan, who works in a voluntary capacity, is available to speak to organisations interested in finding out more about dementia and her experience of being a carer. She can be contacted at (086 ) 3612907.
