Supporting Carers

In this section of the review you can expect to find articles exploring the experience of carers, the impact of caring, both physically and psychologically, the role of other health professionals in supporting carers and any approaches that might support someone caring for a person with dementia.

Mental Health and Morbidity of Caregivers and Co-Residents of individuals with Dementia: A Quasi-Experimental Design.

Maguire, A., Rosato, M. and O’Reilly, D.
International journal of geriatric psychiatry
2016
The Northern Ireland Mortality Study (NIMS) is a prospective study, which is unique in that it links Census returns with deaths that are subsequently registered. For this study by Maguire et al.
(2016), data from the 2011 Census were linked with subsequent deaths records from the General Register’s Office which were followed up for 33 months. Using the Census 2011 returns, 19,863 people were identified as having ‘dementia symptoms’, used in this study as a proxy for cognitive decline. People who co-resided with a person with dementia symptoms and who either self-identified as a caregiver or non-caregiver were enumerated. The caregivers were better educated, living in more affluent households, and had better physical and mental health than non-caregivers. Caregivers providing intense levels of care were older and more likely to be women. The study found that caregiving co-residents were at no greater risk of poor mental health than non-caregiving co-residents. The analysis revealed that caregiving co-residents were 33% less likely to die during the study period than non-caring co-residents and this percentage was greater for caregivers providing intense levels of care, suggesting, in keeping with some other studies, a significant mortality advantage associated with caregiving. The findings of this study highlight the important of assessing both the risks and benefits of caring for a relative with dementia.

Cognitive reserve and self-efficacy as moderators of the relationship between stress exposure and executive functioning among spousal dementia caregivers

Pertl, M.M., Hannigan, C., Brennan, S., Robertson, I.H. and Lawlor, B.A.
International Psychogeriatrics
2017
Pertl et al. (2017) examined the relationship between psychological stress among caregivers, particularly in relation to behavioural and psychological symptoms of dementia (BPSD), and executive function.
They also examined the potential for cognitive reserve and self-efficacy to act as protective factors in executive function. They found that caregivers exposed to more severe BPSD may have greater risk in terms of executive functioning and this has the potential to impact on the entire family. Contrary to their original hypothesis, the authors found that self-efficacy did not moderate the relationship between BPSD severity and psychological stress. However cognitive reserve was found to potentially protect the caregiver from the negative impact of stress on executive function. The authors acknowledge the relationships were relatively weak but argue that the area merits further research.

Caregiver profiles in dementia related to quality of life, depression and perseverance time in the European Actifcare study: the importance of social health.

Janssen, E.P., de Vugt, M., Köhler, S., Wolfs, C., Kerpershoek, L., Handels, R.L., Orrell, M., Woods, B., Jelley, H., Stephan, A. and Bieber, A.
Aging & mental health.
2017
The European “Access to Timely Formal Care (ACTIFCARE) study set out to develop best practice so that people with dementia and their informal carers can get access to timely formal care. Eight countries participated including Ireland. In this paper Janssen et al.
(2017) examine caregiver profiles related to quality of life, depression and perseverance. Five profiles were identified, determined by disease related and caregivers characteristics; younger low strain, younger high strain, older high strain. The most vulnerable groups were found to be younger high strain and older high strain. There were statistically significant differences between groups in relation to quality of life, depressive symptoms and perseverance time. The authors suggest the profiles may be useful in the development of tailored interventions to support caregivers.

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.