Quality of life in informal caregivers of people with dementia
Christopher Butler, NDCN
Dementia is one of the fastest growing major causes of disability globally1. The cognitive and functional decline associated with it affects the health-related quality of life (HRQoL) both of people with dementia and of those who care for them. The burden on informal caregivers has been discussed in a small number of systematic reviews2-6. However, only the review by Shearer et al.6 reports HRQoL measurements for caregivers of people with dementia, and that review found only three studies in which HRQoL was measured in the form of utility values, which are necessary to inform economic evaluations of interventions. Obtaining more precise, comprehensive and up-to-date estimates of the impact of dementia on caregiver HRQoL is important given that many pharmacological and psycho-social interventions aim to delay institutionalisation, and so may increase the burden on informal caregivers. Studies which aim to reduce the burden on informal caregivers also need reliable ways of measuring these changes. More evidence is also needed on the association between caregiver HRQoL and disease severity and progression in those with dementia who are being cared for. If information is available from dementia-specific measures, it may be necessary to develop algorithms to map these estimates to generic preference-based measures which can produce utility weights, and this may require prospective studies which administer dementia-specific instruments and preference-based instruments to the same respondents.
The aims of this project are therefore:
- To conduct a comprehensive systematic literature review of quality of life in caregivers of people with dementia.
- To design and conduct a prospective survey of HRQoL in caregivers and those with dementia who are being cared for, which will provide evidence on the association between disease severity and progression in those with dementia who are being cared for and the HRQoL of their caregiver.
To use the results of the prospective survey, in which disease-specific and utility-based instruments will be administered, to estimate the association between these measures and develop mapping algorithms.
RESEARCH EXPERIENCE, RESEARCH METHODS AND TRAINING
The project will start by building upon an already existing systematic review of the literature on generic preference-based measures of HRQoL for people with dementia (including both self-rated and proxy-rated HRQoL)7. The systematic review of quality of life in caregivers of people with dementia will have two components: one focusing on disease specific measures and the other on generic preference-based measures.
The prospective study will be designed and conducted in collaboration with clinical collaborators, and the candidate will be expected to take the lead in designing and running particular components of this study, and this may include identifying suitable participants and obtaining research ethics approval. Data will be collected on caregiver and patient characteristics, including the HRQoL of people with dementia (both self- and proxy-rated) and their caregivers using both generic preference-based and disease specific instruments.
Finally, the data collected will be used to conduct a mapping of the results of the disease specific instrument to the generic preference-based instrument in order to obtain health state values (utilities) for common disease specific instruments.
By the end of the DPhil, the student will have gained research experience in systematic reviews, survey design and planning, statistical methods, data analysis and data presentation.
FIELD WORK, SECONDMENTS, INDUSTRY PLACEMENTS AND TRAINING
This project builds on a systematic review of patient quality of life conducted as part of the ROADMAP project, a consortium of academic, public sector and industry partners working collaboratively within the European Union Innovative Medicines Initiative framework (http://roadmap-alzheimer.org/). It will involve collecting data on the field in clinical settings (e.g. memory clinics). Training will be offered in the fields of Health Economics, Medical Statistics, Decision Analytic Modelling, Systematic Literature Reviews and Meta-Analysis, Good Clinical Practice, and other courses provided by the Department and the University.
By the end of the DPhil studies, the student will be expected to have published at least two papers as the lead author and to have presented the research findings at national and international meetings.
First- or strong upper second-class undergraduate degree (or equivalent international qualifications) is required; master degree and/or relevant experience is highly desirable. A degree in a quantitative discipline (e.g. Statistics, Mathematics, Economics, Epidemiology, and Operational Research) or, if in different discipline, the inclusion of substantial and well-graded quantitative component, is required. Applicants whose first language is not English are required to provide evidence of proficiency in English at the higher level.
1. OECD. Addressing Dementia: OECD Publishing.
2. Chiao CY, Wu HS, Hsiao CY. Caregiver burden for informal caregivers of patients with dementia: A systematic review. International nursing review 2015; 62(3): 340-50.
3. Crellin NE, Orrell M, McDermott O, Charlesworth G. Self-efficacy and health-related quality of life in family carers of people with dementia: a systematic review. Aging & mental health 2014; 18(8): 954-69.
4. Seeher K, Low LF, Reppermund S, Brodaty H. Predictors and outcomes for caregivers of people with mild cognitive impairment: a systematic literature review. Alzheimer's & dementia : the journal of the Alzheimer's Association 2013; 9(3): 346-55.
5. Wennberg A. DC, Streetman-Loy B., Pham H.,. Alzheimer's Patient Familial Caregivers: A Review of Burden and Interventions. Health and Social Work 2015; 40(4): e162-e9.
6. Shearer J, Green C, Ritchie CW, Zajicek JP. Health state values for use in the economic evaluation of treatments for Alzheimer's disease. Drugs & aging 2012; 29(1): 31-43.
7. Landeiro F, Walsh K, Ghinai I, Mughal S, Nye E, Wace W, Roberts N, Lecomte P, Wittenberg R, Wolstenholme J, Handels R Roncancio-Diaz E, Potashman M H, Tockhorn-Heidenreich A, Gray A M, on belhalf of the ROADMAP Group. Measuring quality of life of people with predementia and dementia and their caregivers: a systematic review protocol.