Up to 60% of dementia cases in Ireland could be undiagnosed

Carmel Geoghegan and her late mother Angela, who was diagnosed with dementia in 2011. Carmel says there have been improvements in recent years, but that patients and their families are still affected by stigma and a lack of support.

Up to 60% of dementia cases in Ireland could be undiagnosed due to a "lack of awareness and stigma" around the disease, an international report has suggested.

The report, by Alzheimer’s Disease International (ADI), the global federation for over 100 Alzheimer’s and dementia associations across the world, has found an estimated 41m cases of dementia are undiagnosed across the globe.

It added that new treatment breakthroughs could result in a “tsunami of demand” for diagnoses.

64,000 people in Ireland live with dementia

In Ireland, there are an estimated 64,000 people living with dementia, with that figure set to double to 150,000 by 2045, according to the Alzheimer’s Society of Ireland.

As a high-income country, the ADI report estimates that 60% of Ireland’s dementia cases could be undiagnosed.

The importance of early diagnosis and early support is emphasised by Prof Suzanne Timmons, consultant geriatrician and clinical lead, HSE National Dementia Office

Paola Barbarino, chief executive of the ADI, said a “lack of awareness and stigma within healthcare systems is hampering efforts to support people living with dementia": 

This misinformation in our healthcare systems, along with a lack of trained specialists and readily available diagnosis tools have contributed to alarmingly low diagnosis rates. 

Separately, a survey conducted by polling company B&A on behalf of the HSE, found that a third of adults (33%) feel that they have a reasonable understanding of dementia while almost nine in ten adults (88%) know something about the condition.  Dr Emer Begley, from the national dementia office, said awareness of the condition has increased in recent years.

“Negative public perceptions and stigma can isolate people with dementia and cause them to withdraw from social engagement and community life,” she said. “More people are seeing the importance of social connections for people living with dementia."

Early diagnosis and early support

Professor Suzanne Timmons, consultant geriatrician and clinical lead of the HSE’s national dementia office, said both early diagnosis and early support services are important: 

It is a very positive indicator that people understand that early diagnosis is a good thing, but equally it is important that people understand the benefits of seeking support in a timely way. 

“It may not be dementia in the end, but the assessment may indicate certain risk factors for future dementia that could be tackled now."

She added: "In the event that it is dementia, for many people, there are medications and cognitive therapies that aim to support the person to carry on their normal daily life despite dementia.”

Patient's family was 'fighting for support'

Carmel Geoghegan, whose late mother Angela was diagnosed with dementia in 2011, said there have been improvements in recent years, but there is still stigma and a lack of support.

“When we did get the diagnosis, it just felt like we were out at sea. I was trying to find answers because I just had no idea what I was doing, to be quite honest with you. We were constantly fighting for any type of support,” she said.

“The stigma around diagnosis is horrendous. It's amazing the ignorance people have, saying they can't do things just because they have Alzheimer's."