WITH people as young as in the early thirties, and from all walks of life, being diagnosed with dementia, the fourth annual conference titled ‘Living with Dementia in Rural Ireland, was held in Boyle, Co Roscommon.

In Ireland, 55,000 people are presently diagnosed with the condition, but it is estimated that the real figure is probably closer to 100,000. This is because of a failure to diagnose, late diagnosis or no acknowledgement by families due to stigma, embarrassment, denial and several others reasons.

Early diagnosis can be a life-changer, giving the individual time to put their affairs in orders, make choices, and work at keeping the diagnosis under observation and control for as long as possible.

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DEMENTIA. This is a word that sends shivers down the spine of everyone, but it is something about which we need as a nation to become more aware of, and to feel comfortable talking openly about it.

Last Monday saw an enriching, emotional and hopefully worthwhile gathering of people with a huge interest in the area of dementia, and key among the gathering were a number of people with a diagnosis. Indeed, the day was filled with the voices of those at the core of life with dementia, the people living with the condition.

Those at the conference heard from Dr Helen Rochford Brennan from Tubbercurry, Co Sligo. Almost seven years ago, at the age of 62, Helen was diagnosed after a five-year struggle with early onset Alzheimer’s. She has since written very personally about living with an Alzheimer-type of dementia. She hopes her participation in research will one day help find a cure.

She is bringing her experience to the widest possible audience, and she is a board member of Alzheimer Europe.

Another speaker was John Quinn who lives in Brisbane, Australia. In 2010, at the age of 59, he was given a diagnosis of dementia. John became a student again and began to read everything he could about dementia. John’s mantra is practical inspirational. “A diagnosis of dementia is not a lifestyle choice. However, now that I have dementia, I can choose my lifestyle, and I choose to live well with dementia.”

Rights and opportunities

The main theme of the day was the right of people with dementia to live in their communities, to be treated like everyone else, having the same rights and opportunities as everyone else. They also demand access to a range of live-in, residential and other community supports.

Professor Eamon O’Shea of NUI Galway and Helen Rochford Brennan spoke about the need in Ireland for a continuum of care. Currently there is nothing available between home care and nursing home care. Helen spoke about her own need to have her social care maintained as she is physically healthy.

Person-centered care was highlighted by Professor Mary McCarron of Trinity College Dublin. She stressed the fact that ‘dementia care is slow care’, in other words it takes time and it is not acceptable to limit care time. She said that we need to look at other models of care, such as independent living and assisted living units, where people can decide to downsize and move to a more manageable-sized home.

Delegates to the conference were told that in Scotland there is a key worker to follow the person with a diagnosis for the first year. They showcase the supports and services available, anything from the local bingo group, occupational therapist, to speech and language. This support is not available here in Ireland and it would make a world of difference to the person with the diagnosis and to their families.

Remaining part of their community is key to their social, mental and physical health. They must be supported to remain living as they did before their diagnosis for as long as possible.

In a case study, Jane O’Sullivan from rural Co Kerry shared with delegates the story of her husband Donie. He was waiting over six months for cognitive therapy but Jane feels it is too late, and those months were crucial for Donie to have been stimulated. Jane’s daughter Maeve spoke about her dad slipping from them, not being able to do the things they did as a family such as a mountain trek. Services are not available for Jane or Donie.

The symptoms

London-based neurologist and author Dr Jules Montague spoke about the importance of early diagnosis and the need to recognise that dementia is a syndrome (a group of related symptoms) associated with an ongoing decline of brain functioning. This may include problems with:

Seán Canney, Minister of State at the Department of Rural and Community Development and the Department of Communications, Climate Action and Environment with special responsibility for natural resources, community affairs and digital development, attended the conference. Afterwards he commented: “I was delighted to attend the Living with Dementia in Rural Ireland conference. This year’s theme was Disability and Human Rights with Dementia.

“Dementia Ireland was set up by Carmel Geoghegan, who was a primary carer for her late mother. She is an advocate and supporter of campaigns that keep the spotlight on dementia and end of life care as a national health priority. She focuses on the development of practice and policies that respect people living with a dementia diagnosis.

“During the time Carmel cared for her mother, the lack of basic information, supports and understanding were the most frustrating obstacles that they faced on a daily basis. Dementia Ireland hopes to help break down the stigma attached to a dementia diagnosis, to build better supports - both on a medical level and at a community level.

“Events like the conference offer a forum for stakeholders and all those interested in dementia to come together and share their knowledge and experience. It was an extremely informative afternoon.”

www.dementiaireland.com