Dementia support in Northern Ireland ‘unequal, inconsistent and inadequate’, hard hitting new report finds

The report reveals that more than two thirds of people affected by dementia in Northern Ireland believed they did not recieve enough support in the past year.

A survey of 1,000 people affected by dementia also showed that the majority, 54%, of carers reached some form of ‘crisis point’ in the past year, with families having no idea of the support available.

The charity say this meant people with dementia were left at risk of going to hospital with avoidable conditions such as injuries from falls or urinary tract infections, something the Alzheimer’s Society say ultimately creates “unnecessary pressure on the NHS”.

It is now calling for government funding to be used for support roles in primary care to provide at least one dementia support worker in their area. These are specialists in the community who provide the missing link between people affected by dementia and support after a diagnosis.

Previous research, the charity say, has suggested that just 38% of people with dementia report they are receiving dementia health and care services, highlighting that the help people need isn’t matching the help they’re getting.

Bernadine McCrory, Country Director for Alzheimer’s Society in Northern Ireland said: “No family affected by dementia should face it alone. Post diagnostic dementia support is unequal, inadequate, and inconsistent, leaving families without the necessary care they need to get through some of the hardest and most frightening times of their lives.

“People tell us that a lack of dedicated support means they are relying on the internet to find out about their condition, or that the wellbeing of their loved one with dementia depends on how well they’re ‘doing their homework’ to find support. Family carers are at breaking point trying to make sure their loved ones are safe, cared for, while trying to maintain some quality of life.”

She continued: “People need the right support from the moment of diagnosis. Having a dedicated dementia support worker in every area would plug the gaps we’re seeing in primary care, give people the one point of contact to help them navigate the health and social care system and ease pressure on health services.

“Dementia support workers provide a crucial link between the 900,000 people living with dementia – including the 22,000 in Northern Ireland – and post diagnostic support, and they are incredibly cost effective — every £1 spent results in £4 worth of benefits.”

The report also showed that the Covid-19 pandemic further impacted access to support and caused many people’s dementia to deteriorate faster than expected. Over four fifths (84%) of survey respondents reported a decline in the health and wellbeing of their loved one over the past year, and over one in four (27%) to an unmanageable level – with carers telling Alzheimer’s Society that not being able to access support during the pandemic led to the person with dementia moving into a care home sooner.