Ireland needs a continuum of care for persons with dementia

Currently there is nothing available between home care and nursing home care.
The Conference, titled ‘Living with Dementia in Rural Ireland,” was held in Boyle, Co Roscommon in May and brought together people from Scotland, England, Ireland and Australia to build awareness and supports for those effected by dementia.

Carmel Geoghegan and Dr Helen Rochford Brennan
Carmel Geoghegan, Dementia Ireland and Dr Helen Rochford Brennan, Chair of the European Working Group of People with Dementia

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 and access to a range of live-in, residential and other community supports.
People as young as early thirties, and from all walks of life are being diagnosed with dementia.

Dr Helen Rochford Brennan from Tubbercurry, Co Sligo, who following a five-year struggle with early onset Alzheimer disease was diagnosed almost seven years ago, at the age of 62, addressed the conference. She said she hopes her continuous participation in research will one day help find a cure. She has worked to bring her experience to the widest possible audience, through her board membership of Alzheimer Europe and her chairing the Working Group of People with Dementia.

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The need for person-centred 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.

People as young as early thirties, and from all walks of life are being diagnosed with dementia.

Delegates to the conference were told that in Scotland there is a key worker to follow the person with diagnosis for the first year. These key workers showcase the supports and services available, from the local bingo group, occupational therapist, to speech and language therapy. 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 Co Kerry shared with delegates the story of her husband, who was waiting over six months for cognitive therapy. She felt those months were crucial for his quality of life and lifestyle. Appropriate and relevant services are simply not available for this couple.

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

Another speaker was John Quinn who lives in Brisbane, Australia and who in 2010, at the age of 59, 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 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.”

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 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.”

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 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.