Cashel’s Kathy Ryan, who was diagnosed with early onset dementia in 2014, heartbreakingly described ‘fading away’ in front of her two sons Andrew and Matt in an interview with The Nationalist last April.
Kathy features in the new video ‘The Experience of a Dementia Diagnosis’, which is a joint campaign by the Irish Dementia Working Group (IDWG) and the Dementia Carers Campaign Network (DCCN), developed to highlight the different experiences that people have of receiving a diagnosis including people of different ages, genders and with different types of dementia.
The video includes personal experiences from people with dementia and family carers, including members of the IDWG and the DCCN.
In addition to this, the advocates are joined by Dr. Tony Foley from the PREPARED project (Primary Care Education, Pathways and Research of Dementia), a three-year national primary care dementia project which aims to support GPs and primary care team members in their delivery of integrated dementia care in the community.
In the coming months, the two advocacy groups, which are both coordinated and supported by The Alzheimer Society of Ireland, will seek opportunities to present to healthcare professionals including GPs, public health nurses, geriatricians, neurologists, memory clinics, physicians, Nursing Homes Ireland and third-level students about this issue.
All healthcare professionals are being encouraged to visit dementiapathways.ie, which is a web-based clinical education resource designed for Irish GPs and community based healthcare professionals.
Dementiapathways.ie is part of PREPARED, which is a project that is part of the overall implementation of the Irish National Dementia Strategy.
The number of people with dementia in Ireland is expected to more than double over the next 20 years, from 55,000 today to 113,000 in 2036. Dementia affects 50 million people worldwide – a number that will almost triple by 2050.
Kathy, who is a member of the IDWG, said: “I was told I had mild cognitive impairment – that didn’t sound so bad. But as I was crossing the carpark [following the meeting], I met the nurse who had assessed me, she apologised for not being with me for the diagnosis. I thanked her and said I was fine. Again she apologised. In that moment I knew, either I hadn’t heard something or something hadn’t been said. I asked her: ‘Are you saying I have Alzheimer’s?’ And the answer was ‘yes’. Even though it can be heartbreaking to hear those words for the first time, I would have preferred if I had been told straight out that I had dementia. For me, not using the word gives it more power and helps to reinforce the stigma that, as people living with the condition, we are fighting against.”