Keeping care in the home

A pilot project is looking at new ways to support Alzheimer’s sufferers in Tipperary

ALZHEIMER’S, WHICH is the commonest form of dementia, is often a private condition, played out behind closed doors, away from the community and within the confines of the family home.

Marie Ryan has Alzheimer’s and she doesn’t care who knows it. In fact, she tells me that sometimes she tells people about her condition, just to see their reaction.

They look at her in puzzlement, as if to say how can someone so coherent be unwell. That’s not to say Marie doesn’t have her frustrations. She used to love going shopping, especially for clothes.

While she has lived with her condition for five years, recently she had to give up driving and she finds it difficult to handle money. This has made shopping a lot more difficult.

“I had to give up driving rather abruptly in the end because my reactions were not quick enough. I drove for 35 years. People ring me now and say ‘Are you in if I call?’ I’m here morning, noon and night, unfortunately. They could never get me before. I do miss Dublin, where you have all the shops. I’m now dependent on other people to bring me out and that is a huge change.”

Marie’s Alzheimer’s manifests itself in several ways – repeatedly she says she believes her house has more bedrooms than it does and that they require cleaning or that clothes need tidying.

“I get on well with people once they don’t ask me a blunt question. I think it’s important to keep talking about it and to try to carry on as normal. I can’t emphasise enough how much company helps.”

Earlier this year, Marie was part of a consortium which successfully bid for south Tipperary to be chosen as one of four pilot projects in Ireland aimed at developing and testing new service models to assist in diverting people with dementia from institutional care.

In other words, if successful, the project should switch the focus from hospitals and other inpatient services, to models of suitable and sustainable community care.

The south Tipperary project is supported by the charity Genio, and is funded to the tune of €700,000 over the next three years.

Dr Caitríona Crowe, who is a local consultant in old-age psychiatry, will lead the project and it has support from all relevant local agencies including the HSE, as well as patients themselves and their families.

“The aim of the project is to find new ways to support persons with dementia at home,” explains Crowe. “If you look at the statistics, instances of dementia are increasing as the elderly population rises.

“We expect the number of cases to double by 2031 and treble by 2041. Most persons with the condition want to stay living at home and don’t want long-term care unless it is really needed.

“We are trying to encourage people to live well at home as long as possible and we’ll be using this funding to try to do that.”

According to analysis of the 2006 census, 1,011 people in south Tipperary were living with dementia, but only half that number had received an official diagnosis.

The funding will enable several initiatives to be implemented. These include increasing public awareness of the condition and, in the process, dispelling some common myths, as well as encouraging people to come forward earlier for diagnosis and treatment.

Of major benefit to people affected by dementia will be the provision of high quality, flexible care in the home to help people stay living at home for as long as possible, as well as tailored palliative end-of-life care.

Dr Christina Donnellan, who is a consultant geriatrician in South Tipperary General Hospital, says that more flexible supports for families will be a key plank of the project. “In general terms, we are looking at more services like home help and home care attendants. We would hope to be able to deliver some patient-centred care so that we would be looking at each person individually and access what it is they need to improve their quality of life.”

Fellow consultant physician Dr Isweri Pillay believes the programme will also be of benefit when applied to end-of-life care.

“The disease trajectory means there is a very long time between diagnosis and death, usually a decade. At some point, the patient can no longer tell you what they want. So we need patients to know where they are in disease so they can decide on their preferences.

“Part of the project then will be finding out exactly what patients need and we are enlisting the support of third-level institutions to do this.”

One local service user who should benefit from the project is 62-year-old Bernadette Hennebry, who lives with her son, Michael, in the Glen of Aherlow.

She was diagnosed with early onset Alzheimer’s (which is diagnosed before the age of 65) and benefits from some home care hours at present, which it is hoped will be increased as a result of the project.

When I visited her last week, Bernadette was quite agitated, accusing Michael of physical violence and directing constant insults towards him. Michael runs the farm seven days a week, and the additional help is needed to enable his mother continue to live at home as her condition progresses.

“This evening, I was moving calves to a new field a bit away from the house when I got a phone call from a neighbour down the road,” Michael says.

“My mother took off walking and a stranger found her sitting on the side of the road. My mother’s mother died at 62 from the same ailment.” On the day I called, Bernadette was convinced family members had taken her jewellery, and she points out Michael’s perceived failings to others present.

“You get used to it,” Michael says. “She’d call you everything. That’s not the way she used to be. She used to be a nice person. She does know what is going on, but, bit by bit, she is losing her grasp of reality.

“We know she will get worse and we will be glad of more support hours. At the moment, we have five hours a week through the HSE and two from the Genio project on a Monday. Anything extra is welcome. I can’t be in two places at the one time. We are coping but it is getting harder so we are grateful for any additional supports.”

Despite the difficulties, Michael says his family’s preference is to care for their mother at home as long as possible. Neighbours and the local community have a role to play in that too and the project will be as much about educating society around dementia and Alzheimer’s, as it will be about the service users themselves.

“The sense of stigma is very real,” explains Dr Caitríona Crowe.

“Generally, people don’t want others to know that a person in their family has dementia. They are embarrassed and therefore don’t always come forward. The Irish are community minded and neighbourly.

“We want to make people feel more comfortable talking about these issues and in turn more accepting of their consequences.”

LIVING WELL WITH ALZHEIMER'S: MARIE RYAN:

“I think people let it go too far before going to a doctor. It is very important to be able to help people in their homes and in the community.

“I pretty much diagnosed myself. I was forgetting a lot of things and a local doctor then sent me for a brain scan. I’m fairly good now. Sometimes, I think bedrooms are where they’re not and money means nothing to me. I can’t add up money and other things like if someone said what year did someone die, I could get it years wrong.

“We need something set up in Tipperary town as we have to travel to Clonmel for our services. I feel there is a lot more to be done for Alzheimer’s. You get lonely. I get satisfaction out of telling people. They need to know. Only the person who is suffering knows what it is like. We all have to die; the main thing is to not be cut off by illness. It is so important you keep talking and keep in touch.

ABOUT THE PROJECT: THE GENIO TRUST:

The Genio Trust was established in 2010 to support projects that positively impact on the lives of people in Ireland who are marginalised. The organisation works in the disability, mental health and dementia fields, supported by Chuck Feeney’s Atlantic Philanthropies. The South Tipperary dementia project is led by Dr Caitríona Crowe and covers a population of 88,441. This project is structured around activities which are relevant to the different stages of dementia including pre-diagnosis, early dementia, progressive dementia, living well with advanced dementia and living well and dying well.

THE FIGURES:

According to analysis of the 2006 census, 1,011 people in south Tipperary were living with dementia, but only 50% had received an official diagnosis