independent

Wednesday 19 June 2019

Dementia strikes at any age

The right of those with dementia to be treated like everyone else was a theme of Boyle gathering

People in their early thirties, and from all walks of life, are now being diagnosed with dementia.

This shocking statistic was highlighted at the fourth annual conference entitled 'Living with Dementia in Rural Ireland' held in Boyle last week.

The main theme of the event 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 and access to a range of live-in, residential and other community supports.

In Ireland, some 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 reluctance by families to acknowledge the issue due to stigma, embarrassment, social isolation and poor care supports and services.

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.

The 'Living with Dementia in Rural Ireland' gathering saw an enriching, emotional and worthwhile gathering of people with a huge interest in the area of dementia, and key among the gathering were a number of people diagnosed with dementia.

Indeed, the day was filled with the voices of those at the core of life with dementia - the people living with the diagnosis.

Those at the conference heard from Dr Helen Rochford Brennan from Tubbercurry, who, almost seven years ago, at the age of 62, was diagnosed after a five-year struggle with early onset Alzheimer disease.

She has since written very personally about living with an Alzheimer-type of dementia. She hopes her continuous participation in research will one day help find a cure, as does the bringing her experience to the widest possible audience, such as her board membership of Alzheimer Europe and Chair of the Working Group of People with Dementia.

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 but inspriational.

"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."

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 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 family.

Remaining part of their community is key to the person living with dementia social, mental and physical health and well-being. 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 County 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. Appropriate and relevant services are simply not available for Jane or Donie.

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: memory loss; thinking speed; language; understanding; judgement; difficulties carrying out daily activities.

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.

"I was delighted to attend the Living with Dementia in Rural Ireland Conference.

"This year's theme for the conference 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."

Dementia, says Carmel is a word that sends shivers down the spine of everyone, but it is something about which we need to become more aware of, and to feel more comfortable talking openly about the issue.

'Living with Dementia in Rural Ireland' sought to address this need and hear what needs to be change at local, national, European and Global levels. For further information contact Dementia Ireland at carmelg@dementiaireland.com

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