Supporting Carers

Carers have cropped up in the many of the publications and reports reviewed for this online resource. Several of the reports identify support for carers as an important topic for policy and service provision, supported by findings from studies on the costs of dementia which show that much of the cost of care falls on family carers. The publications reviewed show that alongside people with dementia, health care professionals, and the general public, family carers of people with dementia responded to surveys and participated in interviews and roundtable discussion, providing valuable information and views on a range of topics, for example, their attitudes to care homes or housing issues.

De-Stress: A Study to Assess the Health and Well-being of Spousal Carers of People with Dementia in Ireland

Brennan, S., Lawlor, B., Pertl, M., O’Sullivan, M., Begley, E. and O’Connell, C.
The Alzheimer Society of Ireland.
The De-Stress study, co-funded by the Health Research Fund and the Alzheimer Society of Ireland, was undertaken to gather information about the health and wellbeing of spouses caring for people with dementia in Ireland.
The study included 205 spousal carers who completed a questionnaire, answered a health screening survey and underwent a cognitive assessment at baseline and follow-up about a year later. Saliva samples were also collected. Most of the spousal carers were women, three-quarters were over 65 years of age and a quarter over 75 years. Most had two or more health conditions, were on medication and had visited a health care professional in the previous month. The majority reported that they provided 81-100% of the care for their spouse with dementia and nearly half reported spending all their waking time looking after their spouse. The average length of time spent caring for a spouse was five years, but caregiving could last much longer, up to 19 years. While the study found that caring for a spouse with dementia can be rewarding, it classed 13.4% of spousal carers as having a moderate to severe level of psychological distress. There were differences between carers with male and older spousal carers reporting less depression and anxiety than female and younger carers. While the study was interested in investigating if there was any link between cognitive function of spousal carers of people with dementia and chronic stress, no significant associations was found. The study highlights the need for adequate supports for spousal carers.

Therapeutic Lying and Approaches to Dementia Care in Ireland: North and South (2016)

Casey, D., Lynch, U., Murphy, K., Cooney, A., Gannon, M., Houghton, C., Hunter, A., Jordan, F., Smyth, S., Conway, A., Kenny, F., Devane, D., Meskell, P.
Institute of Public Health in Ireland.
This study focuses on understanding what is the best approach for carers to take when a person with dementia ask questions or makes statements that are false.
The study was designed using a mixed methods approach comprising a literature review, focus groups with people with dementia and informal carers and an international Delphi survey of professional experts. Three main approaches in use when a person with dementia says somethings that is false were identified from the literature. These were validation therapy, reality orientation and an approach referred to as therapeutic lying, although no consensus exists regarding the latter approach because of the questions it raises about honesty, trust and integrity. The study found strong similarities between the views of people with dementia, their family carers and professional experts, with the consensus being that no single approach suits everyone and is appropriate all the time. There was agreement that lying to a person with dementia with an intention to cause harm was never acceptable, but that therapeutic lying was an acceptable approach, but only when it is used to promote and safeguard wellbeing. However, although there is acceptance of and seemingly high prevalence of therapeutic lying, this practice is at odds with codes of professional conduct and raises questions in relation to ethical and best practice guidelines governing healthcare professional practice, which stipulate that lying to people with dementia is inappropriate. The report presents a set of principles and recommendations emerging from the study.

Continuing to Care for People with Dementia: Irish Family Carers’ Experience of their Relatives Transition to a Nursing Home

Argyle, E., Downes, M, Tasker, J.
Alzheimer Society of Ireland

The majority of people with dementia live in their own homes and family carers provide the main bulk of care for them. However, a time often comes when a person with dementia has to move into a long-stay care setting.

But what are the experiences of family carers in ROI when a relative with dementia moves into a long-stay care setting? This is the primary focus of this research by Argyle, Downes and Tasker (2011). It found a range of factors accumulated and contributed to the decision to pursue long-stay care, with health professionals often being the one to initiate discussions around this.  Family carers experienced conflicting emotions, from relief through to more painful emotions of guilt, grief and loneliness, with varying intensities. How well they adjusted to their relatives’ admission to long-stay care was influenced by the perceived quality of the long-stay care setting, their familiarity with it and receipt of emotional and spiritual support. Following transition, the carers’ role was characterised by both continuity and change. The research indicated that all carers wanted to continue to participate in the long term care of their relative and reported that good lines of communication with staff, having information and education about dementia and dementia care and having ongoing emotional support were essential.