Cork lecturer: Why Day Care at Home is a vital and powerful resource

OF the 64,000 plus people living with dementia in Ireland, almost two-thirds (63%) live at home in their local communities.

An economic evaluation from NUIG estimated that approximately half (48%) of the cost of dementia care in Ireland is absorbed by families, who step in to support the needs of a member living with dementia.

Why do families do this? Yes, it is because of love, and the ties that bind. However, it is also because there are very few alternative options available to them. We know that, by and large, it is the preference of people with dementia to remain living in their own communities.

Many family members of people with dementia over the years have told me how they found themselves in a carer role, trying their best to keep the person with dementia’s wish to remain at home. They do this with very little formal support, often having been offered no dementia care training, while trying their best to keep on top of their other familial, social and/or professional commitments.

Dementia is a complex condition, and the presentation can be somewhat unpredictable, as symptoms can fluctuate day-to-day. Additionally, because dementia is associated with increased age, those diagnosed with the condition also tend to have other comorbid conditions.

This situation can be stressful for all involved – the person who is living with dementia, their primary carer and other family members are all affected in various ways. Decades of research evidence has shown that the consequences of this include poorer physical and mental health outcomes for family carers.

Family carers are the backbone of dementia care, but they sacrifice health, money, time, careers, other social relationships, and even their sense of identity in some cases, to ensure that their person with dementia can remain living at home.

While we do have some wonderful supports nationally, e.g., day centres based in local communities, people living with dementia and carers have long indicated that there is a glaring need for in-home social care in Ireland.

Then, in 2020, the Covid-19 pandemic struck, and suddenly community-based supports and services shut their doors to the public. The Alzheimer’s Society of Ireland (ASI) had long provided dementia-specific day services nationally, and this turn of events greatly unnerved the organisation’s management and staff, who knew how much their membership would be struggling, being cut-off from the world in the most uncertain of times.

What happened next demonstrates the astonishing capacity of the ASI, as an organisation, to pivot in times of crisis, to make lemonade from lemons. The ‘Day Care at Home’ service was initially established to provide an alternative means of support to ASI clients and families, intended as a temporary lifeline, to address Day Care Centre closures.

However, as the pandemic abated, the demand for Day Care at Home continued to surge, despite the re-opening of Day Care Centres. At this point, the National Dementia Office, also understanding the potential additional value of this in-home model of social care, decided to fund an evaluation of the service. This evaluation went to tender, and was won by myself and my co-investigator, Professor Suzanne Timmons, of the Centre for Gerontology and Rehabilitation, at University College Cork. We interviewed dozens of stakeholders regarding Day Care at Home, and we observed the service in action in people’s homes.

What did we learn?

‘Day Care at Home’ fills a critical support gap by providing one-to-one stimulation, tailored activities, and meaningful social engagement to people living with dementia, while also offering a meaningful psychological break (respite) to family carers, for a set number of hours every week.

This is a powerful service, which was acknowledged by Minister Mary Butler, at the launch of the evaluation report in January: “The Day Care at Home service has emerged as a vital resource for people with dementia, ensuring they receive restorative care, while providing much-needed relief for their loved ones”.

While the report also highlights some of the challenges faced by the service, the key problem is that the demand for Day Care at Home services currently far exceeds the supply.

 Minister Butler recently announced an additional €500,000 euro for the Day Care at Home service, which demonstrates an acknowledgement of the immense value of family carers, and the ASI as a core dementia service provider. We can’t rest on our laurels, however. We must continue to apply pressure to ensure resource allocation for services like Day Care at Home.

On March 8, we have an opportunity to vote in two referendums to change the Constitution by inserting a recognition for family carers. Article 42B seeks to recognise the immense value of family carers and creates an obligation for the State to better support them.

Considering the above, I ask that you contemplate a ‘Yes’ vote on both counts, as this constitutional affirmation will result in a greater onus on the State to support those that shoulder the bulk of care for conditions such as dementia, with services like Day Care at Home.

The Day Care at Home service evaluation report can be found on https://alzheimer.ie

Dr Emma O Shea is a lecturer and researcher in the Centre for Gerontology and Rehabilitation, in the School of Medicine, UCC.