The Role Support Networks Play in the Lives of Informal Caregivers of People Living with Dementia

  • Author / Creator
    Lightfoot, Helen N
  • There is a recognition that with an increase in the proportion of the population living with
    dementia there will also be increased demands on informal caregivers. Informal caregivers provide the majority of care to people living with dementia and there is significant physical and emotional stress that is associated with the caregiving role. This study engaged informal caregivers of people living with dementia directly and asked what is the role that support networks in their lives. Two sub questions were also posed: how do informal caregivers see support and what factors influence the role of support networks.
    Based within an ecological framework, a qualitative descriptive methodology was used to collect the insights and experiences of informal caregivers of people living with dementia. Purposeful sampling was used to recruit informal caregivers who were able to share their experience of their support networks. Six participants were recruited and they participated in two semi-structured face to face interviews each at two different times. The interviews were audio recorded. Data analysis involved reviewing the twelve transcribed interviews for significant events and concepts, and grouping events with similarities and differences. These groups were reviewed and the findings revealed the membership of the support networks as well as responding to the main research question and the two sub questions.
    The findings report that caregivers identified four consistent members of their support networks. They are family, friends/community, healthcare providers and formal support groups. The findings for how informal caregivers see support produced four characteristics. These are: 1) support needs to come from all levels; 2) help that is offered without the caregiver asking has a big impact on the caregiver’s sense of support; 3) when others understand dementia and have skills in interacting with the person living with dementia this increases the caregivers sense of support; and 4) when support networks assisted in accessing and implementing resources this also increased the caregivers sense of support.
    The four factors that influence the role of support networks that caregivers identified were: 1) the loss of the core member of their network to the diagnosis of dementia; 2) the worry of caregivers that they are
    increasing the burden on their family when they ask for help; 3) the withdrawal of the community from their network; and 4) how their personal philosophies about caregiving influenced their sense of support.
    The findings for the two sub questions provide the context of the five major roles which asked what is the role of support networks in the lives of informal caregivers of people living with dementia. These themes are: 1) participation in advocacy to address the stigma of a dementia diagnosis; 2) to understand and help others understand dementia; 3) to assist in accessing and coordinating resources; 4) to provide care to the person with dementia; and 5) to help to coordinate support at all levels.
    The conclusions are that while the literature describes each of these themes, hearing directly from informal caregivers about the role of their support networks was absent. As well the role of the community in support networks has not been extensively explored in the literature. Two areas of new knowledge emerged from this research. They are: 1) the recognition that the support of the community is a key element in informal caregiver’s sense of support but the community has often withdrawn and is absent as a member of the support network; and 2) support at all levels is critical and the informal caregiver’s description of these areas adds a clearer picture of how this broader support contributes to their overall sense of support.

  • Subjects / Keywords
  • Graduation date
    Fall 2019
  • Type of Item
  • Degree
    Master of Arts
  • DOI
  • License
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