Year

2012

Degree Name

Doctor of Philosophy

Department

School of Nursing, Midwifery and Indigenous Health

Abstract

Background Dementia is a progressive disabling neurological syndrome for which there are no widely accepted cures or treatments. The main risk factor for dementia is increasing age and, due to the demographic ageing of the population, the number of people living with dementia is expected to increase substantially over the coming decades. While many people with dementia require institutional care, having a co-resident caregiver improves the likelihood that people will be able to remain living at home. There is a growing consensus that the use of formal support services, such as respite care, may enable caregivers to continue in their caring situation for longer. This outcome is consistent with both community preference and increasing government emphasis on supporting people to remain living in the community as they age.

The provision of respite (the temporary relief of the caregiver through the provision of substitute care) is consistently identified by caregivers of people with dementia as one of their critical unmet care needs. Despite this, the overall proportion of caregivers of people with dementia who use available respite programs tends to be low. Whilst previous research has explored factors associated with the use of services that can provide respite, few have identified why some caregivers of people with dementia do not use respite care. In a situation where a large range of publically funded services already exist, it is more economical to improve existing services, than to develop new alternatives. As such, it is of paramount importance to identify why services such as respite may be underused so that the current low utilisation rates in this vulnerable group can be addressed. The need for research which develops an understanding of the experience of health and social care services by people with dementia and their caregivers from a consumer (caregivers) perspective has also been highlighted as particularly important.

This thesis had a number of aims, including to:

  • Generate new knowledge regarding the beliefs that may inform the use and nonuse of different types of respite services by caregivers of people with dementia;
  • Develop a strong consumer perspective on the relative importance of these factors;
  • Ascertain the relative contribution of consumer perspectives (beliefs) as opposed to other predisposing, enabling and need factors which may influence service use and non-use; and
  • Provide an illustrative framework for practitioners and policy makers to translate the evidence generated from the studies into community care pathways.

Method The thesis examined the factors associated with the use and non-use of respite services by caregivers of people with dementia using a mixed methods approach. To develop a comprehensive view of factors associated with the non-use of different types of respite services, a systematic literature review mapped factors utilising a behavioural model of service use. A qualitative approach was then taken, utilising interviews and focus groups to explore the beliefs of caregivers in regards to the factors influencing their use and non-use of different types of respite services. To assess the relative importance of caregiver beliefs, compared to other factors (predisposing, enabling and need) within the dominant behavioural model of service use, a quantitative survey of caregivers was then undertaken. Finally, this thesis addresses the critical need to provide practitioners with know-how to support the translation of evidence into practice. To achieve this, results from the studies were mapped within a consumer-centred framework to assist practitioners and policy makers to address caregiver needs.

Results and Discussion The use of theory in qualitative research with caregivers of people with dementia highlighted that the beliefs that caregivers hold about the utility of respite service differs by service type and according to perceived need. Studies reinforced that the needs of caregivers for different types of support change throughout the continuum of care. Utility was perceived earlier in the trajectory for day care (to meet care recipient needs for mental and social stimulation), but later in the trajectory for in-home care and to meet different needs (to ensure care recipient safety in the face of care recipient functional deficits). Finally, almost without exception, Residential Respite Care (RRC) was positioned as having utility only at the end of the caregiving trajectory. Motivations for use also differed, with day care use motivated by the expectation of positive outcomes for caregiver and care recipient, whilst in-home and RRC were more motivated by a desire to avoid negative outcomes.

From the quantitative study, factors which distinguished non-users from users of day care included caregivers not having someone who assisted them to find services to help them in their caring role, and having less evaluated need (lower depression scores). For RRC, non-users were distinguished by lower evaluated need (depression and burden), and by their caring for someone who was reluctant or refused to use a residential service. Caregivers who were non-users of RRC were also more likely to be caring for someone with lower cognitive impairment and less need for assistance with their activities of daily living. However, for both day care and RRC, the behavioural belief that day centre or RRC use would result in either negative outcomes (functional or affective deterioration) or no positive outcomes for the care recipient was the most significant factor associated with service non-use.

Whilst negative caregiver service beliefs may be a deterrent to service use earlier in the caring trajectory, as the needs of the caregiver increase, those beliefs may be pushed aside as caregivers attempt to access support that will enable them to continue in the caring role for longer.

Finally, the utilisation of a consumer centred framework to define strategies which may support the use of RRC services highlighted the need to address functional, attitudinal, resource and service barriers which exist to the use of those services.

Conclusion This thesis demonstrated the utility of behavioural theory to generate new knowledge regarding the beliefs that inform the use of different types of respite services by caregivers of people with dementia. It highlighted that these beliefs varied according to respite service type (i.e. day care vs. in-home vs. residential respite care); often distinguished users from non-users of services; and varied throughout the continuum of care. It then demonstrated the primary importance of consumer perspectives (service beliefs), compared to other factors (predisposing, enabling and need) within the dominant behavioural model of service use in regards to service non-use. Finally, addressing the critical need to support translation of evidence into practice within dementia care, it also provided an illustrative framework for practitioners and policy makers to translate the evidence generated from the studies into community care pathways to support the use of respite services by caregivers of people with dementia.

FoR codes (2008)

1107 IMMUNOLOGY

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Unless otherwise indicated, the views expressed in this thesis are those of the author and do not necessarily represent the views of the University of Wollongong.