Innovative Tipperary service in need of funding

A vital localised health resource that is unique to south Tipperary is under threat because of a serious lack of funding.
The service, targeted at people with dementia, has been running successfully for the past twelve years and has been lauded nationally for its pioneering work.

But now, the programme – Living Well with Dementia in South Tipperary – has become a victim of its own success.
So committed to its implementation is its team, that it has expanded services over those twelve years, to provide greater care for people with dementia and enlarge its core of support workers.
Unfortunately, funding has not matched its development, and a programme that has been described as a national beacon of innovation and excellence, is now battling to maintain its services.

The figures are stark. A service that provides vital support to people with dementia and their families, allowing those with dementia to spend longer, quality time at home before the need to enter a nursing home, has an annual budget of €280,000.
And that’s to cover an area stretching from Carrick-on-Suir, through Clonmel and Tipperary town to the county Limerick border, as well as the areas north and south of that line.

Running that service are three staff members, but they amount to only 1.6 of a permanent position – Anne Quinn and Mary Ryan are dementia nurse specialists, who job-share, while Emma O’Brien is an Occupational Therapist working a three-day week. The number of support workers, who visit people with dementia across the county, is just nine.
It is estimated that there are between 1,100 and 1,200 people with dementia in south Tipperary. They are not all part of the Living Well with Dementia in South Tipperary programme, but if they were the level of funding for their care would be €250 per person per year.

Nurse specialist Anne Quinn says – “We need additional funding to meet the demand.”
Living Well with Dementia in South Tipperary is unique to south Tipperary. It was launched as a pilot project in the county in 2012 with charitable funding for the first three years. The first threat to its future came after those three years when the funding ended. But so successful had it been in that time that the Health Service Executive (HSE) took over its funding.
The management of the scheme was also assigned to Family Carers Ireland, whose local manager and current Mayor of Clonmel, Richie Molloy, has always been a great support to the service.

However, another issue has arisen with that management process. Family Carers Ireland have restructured recently and the dementia service is now handled at national level, losing the local connection. And Family Carers Ireland are ending their involvement with the service at the end of the year.
That’s an extra burden now for the service to source a new management as well acquiring extra funding.
Anne Quinn explains part of their process. “We recently launched a report that evaluated the last eleven years of the service and to outline how it has evolved over that time. The report not only highlights the benefits of the service but also the challenges that it faces. We need financial certainty. Although we have not received any increase in funding over the past eleven years, we have expanded our services. The costs have gone up and we are now feeling the pinch.”

Occupational Therapist Emma O’Brien adds – “The launch of the report was a great success. We got great support from our local politicians and got people talking about the service. There is a momentum now, we have people advocating on our behalf, and will be looking to put pressure on Minister for Mental Health and Older People, Mary Butler for extra funding.”
In a forward to the report, Dr Caitriona Crowe, who was programme lead at its launch in 2012, said – “Now more than ever, as the population with dementia trebles and as exciting new treatments are within reach, this service needs to be secured, funded and developed. This study provides powerful recommendations on just how this can be achieved.”
The three staff members stress that they are not greedy in their demands. They appreciate the pressure on HSE resources and are grateful for the support they have received since it took over funding in 2015.

TIGHT SHIP
But as they run a very tight ship, any extra funding would be a huge help, if only to provide an extra administrative staff member. Admin work can take them away from their core duties of care and support to the dementia patients.
Financial constraints have seen the number of support workers, who visit people in their homes, drop from sixteen to nine – to cover the county. Visits that may have lasted two hours in the past may now be down to one.
Nurse Anne Quinn says there’s a frustration in seeing support hours cut for people whom you know need it. “There is a growing need for support hours and you know that some people might never get them. We cannot take any more patients at the moment and that’s a shame as it’s important to get to them early. Once we get in early, it’s a huge help and while the dementia might progress, it will be at a slower pace. With extra funding we could increase the hours where we see the need. It will be a huge blow to families if this service is hit,” she states.

Creating a feel good factor around dementia

The following words from a person with dementia are music to the ears of team members of Living Well with Dementia in South Tipperary.

“I may not remember who you are but I will remember how you made me feel.”
Nurse specialist Mary Ryan says that ‘feel good’ factor will last for both the person with dementia and their family.
The hours that support workers spend in the home are a core part of the programme.
It reflects the “Living Well” part of the programme’s title – allowing people with dementia to live well despite their condition.
The restrictions imposed during the Covid lockdown seriously curtailed the services. It was one of the few health services that continued to operate to some extent during the lockdown, but on a much restricted basis, and when the lockdown ended the pressure on the service became evident.

Nurse Ryan says they saw a huge decline in the well-being of people with dementia during Covid.
“Their capacity was reduced, their whole lives changed and because family members were also working from home, there was a bottleneck. It was very difficult in some housesholds. We stayed in touch with families, visited where we could, and no one got Covid as we adhered to all the guidelines.

“Then when Covid was over everyone took the service back. We also had new referrals that stretched the service even further. We had been giving two hours to people and we had to cut back to one hour to accommodate the extra people we had.”
A key element of the support workers’ care for people is continuity and regularity, and when they returned to people’s homes after lockdown, they could see how badly they were missed.

Early intervention is a key part of the service. Nurse Ryan explains – “One woman told us that she cannot drive anymore and if we had a support worker to help her she could bring her out in the car. She’s at an early stage but there is a danger that the dementia will accelerate faster if she’s not going out and meeting people. People with dementia don’t need too much but a certain time that they can look forward to, a routine, when they can dress up and get out, and not have to stay indoors.”
Nurse Ryan cited another example of the impact their service can have. “One lady had a history of depression and we started off with one hour visits and then support workers taking her out for a walk. Suddenly she asked the support worker did they ever go for coffee. We agreed to that and increased the time to an hour and half to include a walk and coffee. We then got a report from the support worker that this lady was now showing another lady how to work the coffee machine. When the lady’s daughter rang me later she started to cry at the end of the phone because her mother had made such progress.”
She points out that some of their cases could involve a man in his 80s caring for his wife, also in her 80s, with no other family around.

“They need support so they can go for a walk, go shopping, visit the library, the church, or just go to bed for a rest because they might have been up three times during the night. Research has shown that these support hours have a beneficial impact on keeping people with dementia at home for longer,” she said.

Nurse Anne Quinn emphasises that these one to two hour sessions with support workers are hugely appreciated by the people with dementia and their families.
“People are not greedy and when we increase their hours, they ask can we afford it. They are very mindful and careful of the service and no one pushes too much. They are grateful for what they are getting and realise that other people need it as well,” she said.

OT Emma O’Brien says part of their brief is to remove the stigma of dementia and show that you can live well with dementia.
“It’s upsetting for families but it’s important that we get to people early and create an awareness and knowledge of what’s happening in the brain. We want to compensate for that and strengthen the brain and keep it engaged, healthy and well. The earlier we do this, the better, and we are happy that we get this across in our report just launched. Everything we say is all backed-up and evidence-based.”

But she adds that there is so much more they could do with extra funding.
“As a team we are working on problem-solving and we are person-centred. If we had more money, we could put it into more hours, such as setting up social groups that mean so much to people,” she said.