Project Tackles Stigma Associated with Dementia and Promotes Active Citizenship in our Communities.
Research on carers across South Tipperary found 88% are spouses living alone as a couple.
Our awareness meeting in Cashel, last week, highlighted the success of the project in transforming the life experience of people with dementia and their families, increasing public awareness and encouraging people to come forward earlier for diagnosis and treatment.
According to Project Lead and Consultant in Old Age Psychiatry Dr. Caitriona Crowe: “Over 48,000 people are living with dementia in Ireland, a number which will double by 2031 and more than treble by 2041. This is a demographic time bomb at the heart of communities across Ireland but we want to emphasise that dementia is something that you live with, not necessarily die of. This project demonstrates that by providing flexible person-centred care in the home, people who wish to remain outside of institutional care can continue to live at home for as long as possible.“
Speaking at the conference Eamon O’Shea, Professor of Economics at NUI Galway, said: “The next 10 years are critical in how we deal with dementia as a nation. We have to embrace the notion of older people with dementia as key members of our community, and break down the stigma around dementia. This translates as connecting people with the community within which they live and empowering them to play an active role in their level of care and care needs in the home.”
Enabling people with dementia to continue living within the home relies on the critical support of carers. A survey of over 50 carers living across South Tipperary, released as part of the conference, highlighted the challenges of old age and concerns about end of life care for their loved ones. It found that the majority of carers are spouses (88%), living alone as a couple and half are over 65 years of age (52%). It also found that only half of carers were confident they could manage end of life care.
Commenting on the findings Dr. Crowe said: “While there was no surprise in the findings from our survey, it highlighted the real needs of carers in our communities. These carers are generally very happy in their caring role for a loved one but also suffer from feelings of exhaustion and loneliness and worry about not being able to cope if the condition deteriorates or at the end of life. The provision of information and support by a healthcare professional to discuss these issues through the programme , and the provision of dementia support workers to people with dementia has proved vital in addressing most of these needs. These supports are crucial for carers all over Ireland as this is a crucial element to ensuring that people living with dementia are able to live a full life in their own home and community rather than in inpatient care.”
Our pilot has been extremely successful. The feedback from people with dementia and their carers has been phenomenal and the research evaluation by Professor Eamon O Shea and Professor Suzanne Cahill strongly support the work of the project.
We believe we have developed a service for people with dementia that is responsive, flexible, non- bureaucratic and highly cost effective. People can contact our co-ordinator Chris, as the single point of contact, and she can organise for them the response that best meets their individual needs. We have developed a unique dementia Support Worker Initiative which provides high quality support which is individualised and delivered one to one in the person's home and in the community. This is provided both regularly and in times of crisis. We have developed the first memory technology library in Ireland for people with dementia. We have developed the roles of Community Connector and Clinical Nurse Specialist for dementia in the community who are both making a massive difference to dementia care for people in South Tipperary. All our activities are totally aligned to the objectives of the Irish National Dementia Strategy.
We are working very hard to ensure that this fantastic service is sustained and mainstreamed and indeed developed further to meet the needs of the ageing population as the number of people with dementia in Ireland double.
This project is making such a massive difference to people's lives, it must not end when the pilot is complete. For the past three years we have been walking side by side with people with dementia and their families as together we try to change the world and we would welcome all suggestions you might have to help us realise this dream.