Family dynamics in dementia care: A phenomenological exploration of the experiences of family caregivers of relatives with dementia

<jats:title>Accessible Summary</jats:title><jats:sec><jats:title>What is known on the subject?</jats:title><jats:p> <jats:list list-type="bullet"> <jats:list-item><jats:p>Several studies explore and describe the role of family dynamics in dementia care.</jats:p></jats:list-item> <jats:list-item><jats:p>However, few focus specifically on the diversity of family relationships that influence family caregivers’ experiences of providing care to a relative with dementia.</jats:p></jats:list-item> <jats:list-item><jats:p>The role of family caregivers engaging in unpaid care of relatives with dementia is becoming more and more critical as the numbers of people living with dementia increase across the globe.</jats:p></jats:list-item> <jats:list-item><jats:p>Family caregivers are a diverse group of people as there are different categories of kinship relations and thus cannot be viewed as a single collective.</jats:p></jats:list-item> <jats:list-item><jats:p>They are linked intricately to their family and social support systems, however, they often experience limited family support, and tensions between family members can be a major source of stress.</jats:p></jats:list-item> <jats:list-item><jats:p>Hence, health professionals need to deepen their understanding of family relationships to enable them to provide effective advocacy and clinical support to family caregivers.</jats:p></jats:list-item> </jats:list> </jats:p></jats:sec><jats:sec><jats:title>What the paper adds to existing knowledge?</jats:title><jats:p> <jats:list list-type="bullet"> <jats:list-item><jats:p>This study is unique in that it focuses on a range of family relationships in which a person with dementia finds themselves. It highlights that this network of complex connections influences the caregiving process.</jats:p></jats:list-item> <jats:list-item><jats:p>The study demonstrates the important role that siblings can play in sharing the caregiving load. However, this sharing is rarely balanced or fair and there is always someone in the family who carries the heaviest load.</jats:p></jats:list-item> <jats:list-item><jats:p>Communication between family members is frequently a challenge, with family members experiencing denial or an inability to understand the challenges encountered by the family caregiver.</jats:p></jats:list-item> <jats:list-item><jats:p>Most studies focus on the relationship between the family caregiver and the relative with dementia alone, rather than the family network of the family caregiver and how it influences the caregiving process.</jats:p></jats:list-item> <jats:list-item><jats:p>This study is unique as it focuses on family dynamics and the family network, particularly the range of family relationships in which family caregivers and their relative with dementia find themselves.</jats:p></jats:list-item> <jats:list-item><jats:p>Other studies tend to focus on a specific kinship category and the family network, such as an adult child, caring for their parent, but this study presents a wide variety of kinship categories to demonstrate the diversity of family caregiving contexts.</jats:p></jats:list-item> <jats:list-item><jats:p>The family caregivers in this study all highlighted the need or desire for effective support from the family network.</jats:p></jats:list-item> <jats:list-item><jats:p>Challenges of communication between family members and the caregiver were also evident and were framed within the existing family dynamic of each family.</jats:p></jats:list-item> </jats:list> </jats:p></jats:sec><jats:sec><jats:title>What are the implications for mental health nursing?</jats:title><jats:p> <jats:list list-type="bullet"> <jats:list-item><jats:p>The findings suggest the need for communication (training and therapeutic) interventions between family caregivers and other family members (secondary caregivers). Mental health nurses are often well positioned to offer the family caregiver the option to undertake such an intervention.</jats:p></jats:list-item> <jats:list-item><jats:p>The findings emphasize the diversity of family caregiving situations and argue that mental health nurses can assess the nature of the care situations and work with families on how best to address the needs of the relative with dementia and the main caregiver.</jats:p></jats:list-item> <jats:list-item><jats:p>However, tensions frequently exist between family members, some of which existed prior to the relative acquiring dementia and other tensions as a consequence of the relative acquiring dementia. Mental health nurses could assist as a mediator between family members in order to assist families to become more cohesive.</jats:p></jats:list-item> </jats:list> </jats:p></jats:sec><jats:sec><jats:title>Abstract</jats:title><jats:sec><jats:title>Introduction</jats:title><jats:p>This article explores the diverse nature of family caregivers, focusing on the different categories of kinship relations. Family caregivers are linked intricately to their families, but often experience limited family support, causing stress and tension between family members.</jats:p></jats:sec><jats:sec><jats:title>Aim</jats:title><jats:p>The article aims to explore the family relationships of family members caring for relatives with dementia in order to provide an insight into the role of such relationships on the caregiver relative with dementia dyad.</jats:p></jats:sec><jats:sec><jats:title>Method</jats:title><jats:p>A phenomenological, exploratory‐descriptive design was used. Eight participants took part and data were obtained using collages and semi‐structured interviews.</jats:p></jats:sec><jats:sec><jats:title>Results</jats:title><jats:p>A range of family relationship patterns was highlighted including sibling involvement in the caregiving process; spousal involvement in supporting a caregiver of a parent; and spousal involvement in caring for their spouse.</jats:p></jats:sec><jats:sec><jats:title>Discussion</jats:title><jats:p>The family caregivers highlighted the need or desire for effective support from the family network. Challenges of communication between family members and the caregiver were also evident and were framed within the existing family dynamic of each family.</jats:p></jats:sec><jats:sec><jats:title>Implications for Practice</jats:title><jats:p>Mental health nurses need to deepen their understanding of family relationships to enable them to provide effective advocacy and clinical support to family caregivers and assist families to become more cohesive.</jats:p></jats:sec></jats:sec>