PhD Study : Identifying the health needs and promoting resilience in dementia caregivers

Summary

Dementia affects 1 in 20 adults over the age of 65 years, increasing to 1 in 5 in those over 80 years of age (Egdell, 2013), contributing to high levels of disability and poorer mental health in ageing (WHO, 2012), in both sufferers and their carers (Ask et al., 2014).  It is vital to provide support to those with dementia and their carers (Prince et al., 2015; Chenoweth et al., 2016). supporting families in caring for relatives with dementia must be a pivotal element of any national strategy (Scottish Govt,2013; DHSSPNI, 2011). While family and friends are generally willing to provide an extraordinary range of informal caring which would otherwise be carried by public and charitable services their support can be taken for granted by professionals (Knapp, 2013).

However, while many family caregivers derive satisfaction from doing so, they are likely to experience disruption to their own working and family lives in order to attend meetings with doctors and care staff.  Evidence from our consultation with carers and supported by research evidence reveals a weary resignation of having to explain and negotiate care with an ever-changing cast of professionals. Families of people with dementia are known to face greater emotional and physical strain than do those caring for people with other illnesses (Ory et al, 1999; Breinart 2012; Mohamed, 2011). Where there is strain, this is likely to be compounded by challenges to knowledge and help-seeking in dementia care, difficulties of communicating need and decision-making.

In the UK, recent evidence from primary care revealed that family members (not professionals) were the main care coordinators, and that transitions between services -for example from specialist care to general practice were challenging (Mason, et al, 2012).  It is acknowledged that families of people with dementia require support to help them in their role as proxy decision-makers. However, families of patients with complex needs are often daunted and distressed by a health and social care system perceived as poorly integrated. Family carers sometimes describe frustration with services and the person for whom they are caring, increasing isolation and diminishing self-esteem. Thus, family carers may feel that they lack the knowledge and competence to deal with their family member’s needs or how to seek appropriate help.

The Dementia Strategy for Northern Ireland recognises the need to support carers, in order for dementia sufferers to stay in their own homes for longer. From our research with dementia carers, they report little or no support, with the exception of the Alzheimer’s Society. More research needs to be done to identify what their needs are, specifically in relation to information and maintaining social support – factors which mitigate social marginalisation and linked to resilience. Few studies have considered the health needs of carers and how psychological interventions can be used to promote more effective coping strategies and resilience in carers to maintain their physical and mental health.

The aim of this project is to conduct a health needs assessment on dementia carers, employing a social cognition model of behaviour change to formulate, design, deliver and evaluate a skills training and coping resources intervention that could improve their health and psychological well-being.

Methods: This study will require a mixed methods approach to the research, employing focus groups and a survey based study to identify the health needs of dementia carers.  We will undertake this study in collaboration with memory clinics based in the Health and Social Care Trusts and with Alzheimers Society (we currently have research collaborations in Dementia studies with AS and the Trusts (Leavey et al, 2016). The intervention will be based on the findings from this and a systematic review of current psychological interventions will be carried out to identify the most appropriate and affective interventions, to meet the health assessment needs. This will be piloted and evaluated. It has the potential to impact on current policy and practice within Northern Ireland with regards support and help given to dementia carers and builds on current research within the school.

References

Ask, H. et al. (2014). Mental health and wellbeing in spouse of persons with dementia: the Nord-Trondelag health study. BMC Public Health, 14, 413. www.biomedcentral.com/1471-2458/14/413.

Chenoweth, L. et al. (2016). Coaching in self-efficacy improves care responses, health and well-being in dementia carers: a pre/post-test/follow up study.  BMC Health Services Research, 16, 166. DOI 10.1186/s12913-016-1410-x.

Edgell, V. (2013). Who cares? Managing obligations and responsibility across the changing landscapes of informal dementia care. Ageing Society, 33, 888-907.

Livingston, G., Leavey, G., Manela, M., Livingston, D., Rait, G., Sampson, E. Bavishi, S., Shahriyarmolki, K., Cooper, C. (2010) Making decisions for people with dementia who lack capacity: A qualitative study of family carers in Britain.  British Medical Journal. 341, 494.

Prince, M. et al. (2015). World Alzheimer’s report 2015 – the global impact of dementia – an analysis of prevalence, incidence, cost and trends. London: Alzheimer’s Disease International. World Health Organisation (2012). www.who.int/mediacentre/factssheets/fs362/en/index.html.

Menne HL, Whitlatch CJ. Decision-Making Involvement of Individuals With Dementia. The Gerontologist. 2007; 47(6): 810-19.

Scottish Government. Scotland’s National Dementia Strategy 2013-2016. http://www.scotland.gov.uk/Resource/0042/00423472.pdf. 2013.

DHSSPNI. Improving Dementia Services in Northern Ireland; a Regional Strategy. November 2011. Available on   http://www.dhsspsni.gov.uk/improving-dementia-services-in-northern-ireland-a-regional-strategy-november-2011.pdf  2011.

DHSSPNI. Transforming Your Care; A Review of Health and Social Care in Northern Ireland. http://www.dhsspsni.gov.uk/transforming-your-care-review-of-hsc-ni-final-report.pdf. 2011.

Knapp M, Prince M, Albanese E, Banerjee S, Dhanasiri S, Fernandez J. Dementia UK (A report to the Alzheimer's Society on the prevalence and economic cost of dementia in the UK produced by King's College London and London School of Economics). 2007.

Ory MG, Hoffman RR, Yee JL, Tennstedt S, Schulz R. Prevalence and impact of car;e giving: a detailed comparison between dementia and non-dementia caregivers. Gerontologist. 1999; 39: 177-85.

Beinart N, Weinman J, Wade D, Brady R. Caregiver Burden and Psychoeducational Interventions in Alzheimer’s Disease: A Review. Dementia and Geriatric Disorders. 2012; 2: 638-48.

Mohamed S, Rosenheck R, Lyketsos CG, Schneider LS. Caregiver burden in Alzheimer disease: cross-sectional and longitudinal patient correlates. American Journal of Geriatric Psychiatry. 2010; 18: 917–27.

Mason B, Epiphaniou E, Nanton V, Daveson B, Harding R, Shipman C, et al. Towards improving the co-ordination of care for progressive ife-limiting illnesses: a UK mixed methods study. In: Society of Academic Primary Care conference; 2012: .

Leavey, G., Abbott, A., Watson, M. et al (2016) The evaluation of a healthcare passport to improve quality of care and communication for people living with dementia (EQuIP): a protocol paper for a qualitative, longitudinal study. BMC Health Services Research. 9;16(a):363. doi: 10.1186/s12913-016-1617-x.

Essential criteria

Applicants should hold, or expect to obtain, a First or Upper Second Class Honours Degree in a subject relevant to the proposed area of study.

We may also consider applications from those who hold equivalent qualifications, for example, a Lower Second Class Honours Degree plus a Master’s Degree with Distinction.

In exceptional circumstances, the University may consider a portfolio of evidence from applicants who have appropriate professional experience which is equivalent to the learning outcomes of an Honours degree in lieu of academic qualifications.

Desirable Criteria

If the University receives a large number of applicants for the project, the following desirable criteria may be applied to shortlist applicants for interview.

• First Class Honours (1st) Degree
• Masters at 70%
• Research project completion within taught Masters degree or MRES
• Experience using research methods or other approaches relevant to the subject domain
• Publications record appropriate to career stage

Funding and eligibility

The University offers the following levels of support:

Vice Chancellors Research Studentship (VCRS)

The following scholarship options are available to applicants worldwide:

• Full Award: (full-time tuition fees + £19,000 (tbc))
• Part Award: (full-time tuition fees + £9,500)
• Fees Only Award: (full-time tuition fees)

These scholarships will cover full-time PhD tuition fees for three years (subject to satisfactory academic performance) and will provide a £900 per annum research training support grant (RTSG) to help support the PhD researcher.

Applicants who already hold a doctoral degree or who have been registered on a programme of research leading to the award of a doctoral degree on a full-time basis for more than one year (or part-time equivalent) are NOT eligible to apply for an award.

Please note: you will automatically be entered into the competition for the Full Award, unless you state otherwise in your application.

Department for the Economy (DFE)

The scholarship will cover tuition fees at the Home rate and a maintenance allowance of £19,000 (tbc) per annum for three years (subject to satisfactory academic performance).

This scholarship also comes with £900 per annum for three years as a research training support grant (RTSG) allocation to help support the PhD researcher.

• Candidates with pre-settled or settled status under the EU Settlement Scheme, who also satisfy a three year residency requirement in the UK prior to the start of the course for which a Studentship is held MAY receive a Studentship covering fees and maintenance.
• Republic of Ireland (ROI) nationals who satisfy three years’ residency in the UK prior to the start of the course MAY receive a Studentship covering fees and maintenance (ROI nationals don’t need to have pre-settled or settled status under the EU Settlement Scheme to qualify).
• Other non-ROI EU applicants are ‘International’ are not eligible for this source of funding.
• Applicants who already hold a doctoral degree or who have been registered on a programme of research leading to the award of a doctoral degree on a full-time basis for more than one year (or part-time equivalent) are NOT eligible to apply for an award.

Due consideration should be given to financing your studies. Further information on cost of living