The largest study undertaken in Ireland to examine the health and wellbeing of people caring for their spouse with dementia was launched during national carers Week. The study by researchers at Trinity aimed to find out more about the carers’ lives and health, their caring role and the impact this has on their lives. The De-Stress study also explored the amount of stress they experience, as well as exploring the positive aspects of caring.
The findings of the De-Stress study also provide information about the level and extent of care being provided and chronic physical and mental health conditions among carers. Of particular interest are the high levels of mental health issues among carers, such as depression and anxiety, which can have an impact on confidence, as carer Jacquelina Keane and research participant highlights: "People have no idea how isolating caring can be."
The findings include:
- Nearly half of the carers in the study spent all of their waking time looking after their spouse, and 15% had given up their jobs in order to care for their spouse;
- Most carers (79%) reported that they themselves provided 81% – 100% of the care for their spouse. Women more commonly provided this level of care than men;
- Depression and anxiety were common among family carers, and around a third of participants had difficulty with at least one core caring activity, such as managing money, shopping for or preparing food or managing appointments;
- Most of the carers took prescribed medicines. Those who had more chronic health conditions (such as arthritis, hypertension or diabetes), were more likely to have high carer burden and lower quality of life;
- The majority of carers agreed that there were positive aspects of caring, such as appreciating life more, and feeling needed and useful. Most felt they had not had a choice in taking on the role of spousal carer, but took it on willingly.
- Carers experience a decline in cognitive functions (such as attention and ability to plan), over a one-year period, but this was not linked to their stress levels or a genetic susceptibility to developing Alzheimer’s Disease;
- The De-Stress report suggests that the needs of family carers in Ireland should be more thoroughly assessed and addressed as a matter of urgency.
Professor Sabina Brennan, Director of the NEIL Memory Research Unit, Trinity College Dublin said: “Carers are an invaluable resource, but sadly they are not adequately supported in their role and consequently their health may be affected. If we are serious about supporting people to live well and die in their chosen setting then we need to invest in quality services to support both carers and those being cared for.”
Professor Brennan continued: “Lack of understanding and fear may keep people from visiting an individual with dementia but I would ask people to call around and have a chat with the carer – even a simple gesture like that could make a difference and lessen the sense of isolation that carers can experience. I would also urge carers to look after themselves – it is sensible and not selfish to look after your own health and make a point of seeking social contact - say hello to friends and to say hello to socialising.”
CEO, The Alzheimer Society of Ireland, Pat McLoughlin said: “Becoming a carer for a loved one with dementia is a life-changing experience. Carers play an immensely valuable role in understanding and supporting people with Alzheimer’s and other forms of dementia. Our current health and social care system depends largely on family carers who provide the main bulk of care; its estimated value to the State is in the region of €807 million per annum.
“The ASI provides a range of specialist services throughout Ireland that provide support and advice to carers as well as people with dementia, including a National Helpline Service, social clubs, support groups, a Dementia Adviser service which provides individualised information and sign-posting service, Day Care and Respite Centres. All of our services operate using a person-centred care approach.”
The study was funded by the Health Research Board and The Alzheimer Society of Ireland (ASI).
Thanks to additional funding from the HRB the research team has translated scientific content into useful, digestible and engaging short films and web content about carer health and wellbeing (www.hellobrain.eu/carers) Resources for carers can be found on www.hellobrain.eu/carers and on www.alzheimer.ie