Supporting Carers

In this review of journal articles, the work relating to carers is fairly comprehensive, yet still limited in scope given that carer strategies exist in both jurisdictions and both dementia strategies refer specifically to the need to support carers. A number of articles explore the experience of carers, including those supporting someone with early onset dementia.  A literature review on male care giving is included, while two papers from the same study explore the relationship between self-efficacy, caregiver burden and the desire to institutionalise. Only one paper considers the role of professionals in supporting carers.  Two niche papers conclude this collection that examine supporting carers with ICT and the experience of carers when their spouse ceases driving.

Caring for dementia carers: the role of general practitioners in Ireland.

O'CONNOR, C
Irish Journal of Medical Science
2011

O’Connor (2011) reviewed the literature on the role of GPs in ROI in caring for carers.

 The paper provides a general report on the carer profile in ROI, the impacts on their health and wellbeing, and the value of psychosocial interventions, occupational therapy, respite care and support groups.  The author suggests that carers are generally not satisfied with the support from their GPs and that as the first point of contact in ROI, GPs should be aware and watch out for adverse health outcomes on carers of people with dementia.

‘Sustaining Place’ – a grounded theory of how informal carers of people with dementia manager alterations to relationships within their social worlds

DALY, L., MCCARRON, M., HIGGINS, A., MCCALLION, P.
Journal of Clinical Nursing.
2013

This study by Daly et al. (2013) took a grounded theory approach to developing a theory that would explain the social processes informal carers used to manage changing social interactions in their worlds.

Interviews were held with informal carers and participants from the health, social care and disability sectors working with people with dementia and their carers. The resulting theory of ‘Sustaining Place’ suggests that “the life-worlds of the person with dementia and informal carer are affected by spatial and inter-relational alterations, interrupting ways of being in and relating to the social world and those encountered in it.”  

More Mad and More Wise

O’NEILL, D.
Accident, Analysis and Prevention
2012

Wall and Chard (2010) document a very specific aspect of the caregiver experience in an article exploring spouses’ experiences when the person with dementia ceases to drive as a result of their condition.

 They found that responsibility regarding driving cessation rests with family caregivers and that there is little support from other stakeholders.  It is a highly charged emotional event for the spouse that results in a loss of independence for the person with dementia. For an interesting commentary on this issue see “More Mad and More Wise” (O’Neill, 2012).

Research article: "it's complicated to get someone off the road" - spouses' experiences of driving cessation(2010)

Research article: "it's complicated to get someone off the road" - spouses' experiences of driving cessation

WALL, O., CHARD, G.
Irish Journal of Occupational Therapy
2010

Wall and Chard (2010) document a very specific aspect of the caregiver experience in an article exploring spouses’ experiences when the person with dementia ceases to drive as a result of their condition.

 They found that responsibility regarding driving cessation rests with family caregivers and that there is little support from other stakeholders.  It is a highly charged emotional event for the spouse that results in a loss of independence for the person with dementia. For an interesting commentary on this issue see “More Mad and More Wise” (O’Neill, 2012).

More Mad and More Wise” (O’Neill, 2012).

Teleconferencing as a Source of Social Support for Older Spousal Caregivers: Initial Explorations and Recommendations for Future Research

MCHUGH, J., WHERTON, J. P., PRENDERGAST, D. K, LAWLOR, B.A.
American Journal of Alzheimer’s Disease & Other Dementias
2012

McHugh et al (2012b) report on caregiver assessments of a pilot teleconferencing support group. This was a six-week social support group and participant opinions were gathered using semi-structured interviews. Two broad themes emerged; group processes and barriers.

Caregivers shared a common experience of caring and appreciated the support from others having a similar experience to their own.  Many of the barriers were technical in nature and the lack of face-to-face contact somewhat inhibited participants’ level of comfort with one another. The authors conclude that teleconferencing has the potential to offer social support for caregivers but requires leadership, researcher support, familiarity and comfort among participants, and the opportunity to be a longer term commitment.

Identifying opportunities for supporting caregivers of persons with dementia through information and communication technology

MCHUGH, J.E., WHERTON, J.P., PRENDERGAST, D.K., LAWLOW, B.A.
Gerontechnology
2012

McHugh et al. (2012a) explore opportunities for supporting caregivers of persons with dementia through information and communication technology (ICT).

 The findings confirm the value of existing tools but suggest a need to broaden the scope of these tools to support caregivers’ personal and mental wellbeing.  The authors highlight the need for more flexible, unobtrusive ICT solutions that offer opportunities for sustaining social networks and for technology that facilitates communication between the person with dementia and the caregiver in the home setting.

The experience of sons caring for a parent with dementia

MCDONNELL, E., RYAN, A.A.
Dementia
2014

McDonnell and Ryan review the literature on men caring for a relative with dementia (2013) and explore the experience of sons caring for a parent with dementia (2014).

 In the review they highlight the strengths of men as caregivers and suggest that consideration must be given to addressing the specific needs of male caregivers.  The review specifically comments on male sons as caregivers and the second paper explores this role in a study with a purposeful sample of sons in rural areas of ROI.  In this study the authors highlight the significance of a strong parental bond in reasons for taking on a care giving role.  As in other studies, a ‘getting on with it’ approach is evidenced while there is also evidence that many do not feel adequately supported. This study suggests that greater research is required into the role of sons as carers and the types of supports that would work best for this carer group.

Male care giving in dementia: A review and commentary

MCDONNELL, E., RYAN, A.
Dementia
2013

McDonnell and Ryan review the literature on men caring for a relative with dementia (2013) and explore the experience of sons caring for a parent with dementia (2014).

 In the review they highlight the strengths of men as caregivers and suggest that consideration must be given to addressing the specific needs of male caregivers.  The review specifically comments on male sons as caregivers and the second paper explores this role in a study with a purposeful sample of sons in rural areas of ROI.  In this study the authors highlight the significance of a strong parental bond in reasons for taking on a care giving role.  As in other studies, a ‘getting on with it’ approach is evidenced while there is also evidence that many do not feel adequately supported. This study suggests that greater research is required into the role of sons as carers and the types of supports that would work best for this carer group.

Self-efficacy for managing dementia may protect against burden and depression in Alzheimer's caregivers

GALLAGHER, D., NI MHAOLAIN, A., CROSBY, L., RYAN, D., LACEY, L., COEN, R., F., WALSH, C., COAKLEY, D., WALSH, J., B., CUNNINGHAM, C., LAWLOR, B., A.
Aging & Mental Health
2011

In a study of eighty-four patient/caregiver dyads with mainly mild to moderate Alzheimer’s disease, Gallagher et al. (2011c) examined the relationship between self-efficacy for dementia management and symptoms of burden and depression among caregivers.

 They found that self-efficacy for symptom management of those with mild to moderate dementia directly impacts on the psychological health of caregivers, while among those with moderate to severe dementia, self-efficacy was more likely to mediate the relationship between the two.  They also found that self-efficacy may act as a buffer against the impact of behavioural symptoms on caregiver depression and burden.

Dependence and caregiver burden in Alzheimer’s disease and mild cognitive impairment (2011a)

Determinants of the desire to institutionalize in Alzheimer's caregivers(2011b)

Determinants of the desire to institutionalize in Alzheimer's caregivers

GALLAGHER, D., NI MHAOLAIN, A., CROSBY, L., RYAN, D., LACEY, L., COEN, R.F., WALSH, C., COAKLEY, D., WALSH, J.B., CUNNINGHAM, C., LAWLOR, B.A.
American Journal of Alzheimer's Disease and Other Dementias
2011

In a second paper from the same study Gallagher et al. (2011b) explored determinants of the desire to institutionalise (DI) among those caring for someone with Alzheimer’s disease.

 They asked whether potentially modifiable caregivers attributes were linked to DI and found that the most significant of these were caregiver burden and depression.  They also found an association between low caregiver self-efficacy and DI, and that caregivers with an emotion focused coping style were less likely to report DI.  The authors conclude that a multifactoral approach should be taken to reduce symptoms of burden and depression among caregivers. 

Dependence and caregiver burden in Alzheimer’s disease and mild cognitive impairment (2011a)

Self-efficacy for managing dementia may protect against burden and depression in Alzheimer's caregivers(2011c)

Dependence and caregiver burden in Alzheimer’s disease and mild cognitive impairment

GALLAGHER, D., NI MHAOLAIN, A., CROSBY, L., RYAN, D., LACEY, L., COEN, R.F., WALSH, C., COAKLEY, D., WALSH, J.B., CUNNINGHAM, C., LAWLOR, B.A.
American Journal of Alzheimer's Disease and Other Dementias
2011

One hundred participants with mostly mild to moderate dementia and their caregivers took part in this study by Gallagher et al (2011a), the objectives of which were to determine the impact of patient dependence on caregiver burden and to determine its value as a predictor of care

giver burden. The authors report functional decline and patient dependence as most predictive of caregiver burden in the earlier stages of dementia while neuropsychiatric or behavioural symptoms were most predictive as dementia progressed.  The authors also comment on the usefulness and easy administration of the dependence scale.

Determinants of the desire to institutionalize in Alzheimer's caregivers(2011b)

Self-efficacy for managing dementia may protect against burden and depression in Alzheimer's caregivers(2011c)

Early-onset dementia: the impact on family caregivers

FLYNN, R., MULCAHY, H.
British Journal of Community Nursing
2013

Flynn and Mulcahy (2013) used a conceptual model of caregiver burden to examine the impact of early onset dementia on caregivers.

 The authors found that most participants had a negative experience of getting a diagnosis, and that there was a physical, social and emotional burden associated with care giving.  Caregivers particularly referred to the financial burden for those with early onset dementia who may be at the height of their working life.  They also reported the impact of changing relationships and of the lack of knowledge and resources to support them.