When a person with dementia is receiving in-hospital treatment, transitioning through the hospital system and subsequently assessed as requiring residential care, family caregivers may feel overwhelmed and disempowered by the healthcare system (Haesler et al. 2010). There is a danger that the caregiver will feel excluded from decision-making and uncertain about their role as key provider of care for their relative (Efraimsson et al.2006). Although there is a growing body of literature exploring family involvement in the care of persons with dementia in Australia and internationally, minimal research has been conducted on the impact that transition from the sub-acute inpatient facility to a residential facility has on family caregivers. The aims of this study were to explore the experiences of caregivers of people with dementia, who transitioned through the sub-acute inpatient facility and were waiting for residential care placement.
Potential participants were identified from patient hospital admission data at The Mornington Centre, an Aged Rehabilitation and Geriatric Evaluation and Management sub-acute inpatient facility on the Mornington Peninsula, Victoria, Australia. The treating clinical team were consulted regarding the suitability of caregivers, for example, in terms of their own health, language spoken and emotional state before being invited to participate. Participants were aged over 18 years old, spoke English, and had been caring for a person with dementia at home prior to that person being admitted to the sub-acute inpatient facility. This study utilized a descriptive qualitative design (Sandelowski 2000); each caregiver was interviewed using a conversational approach through which they were encouraged to speak about their experiences during this transition phase. This approach allowed for the subjectivity of the individual’s experience to be captured; the personal experiences and stories unique for that person (Taylor 2006) unlikely to be evident in quantitative surveys. Following consent, the interviews were conducted in a quiet location, at The Mornington Centre; all interviews were taped and then professionally transcribed. The interviews were conducted between April and November 2013. Thematic analysis using Sandelowski’s (2000) method of qualitative description was conducted to explore the experience of the caregiver during the transition of a relative with dementia through the sub-acute inpatient facility moving into a residential aged care facility.
Participants were aged between 34 and 92 years with equal gender distribution. The majority of the caregivers were in their late 70s or early 80s. Every person that was asked to be interviewed agreed to participate. The caregiver participants consisted of six husbands, seven wives, two daughters, two sons, one daughter-in-law and two friends (both males). The interviews ranged in length from 13.5 mins to 43 mins (average 25.01 mins + 7.39 (SD)). In total, 502 minutes of interview data was collected. Many of the caregivers appreciated the opportunity to talk about their experience, likening it to ‘getting things off their chest’. One woman said that no one had asked her how she felt about the experience with her husband’s dementia before. The findings of this study emphasise the wave of emotions the caregiver will experience during this transition phase. Caregivers found it difficult to adjust to their new role as the visitor. Caregivers were relieved that they were no longer solely responsible for their relative or friend but they felt they were losing control and guilty that they could no longer care for them. Spousal caregivers spoke about the support they received from other family members; however, despite having family around them, they spoke of loneliness.
During a hospital stay, the focus is on the patient and not the caregiver; rarely does someone ask how the caregiver is feeling and how they are coping. These interviews gave the caregiver the opportunity to speak to someone about themselves. The results from this study were used to produce a brochure that will be given to caregivers, assuring them that they are not alone and the emotions they are experiencing are natural responses during this transition phase. The brochure will include contact details for support services identified in the interviews to help caregivers overcome their difficulties. The distribution of the brochure is intended to improve the family caregiver’s experience within the healthcare system and make this transition phase easier. The findings of this study have also been presented to allied health and nursing staff that have daily contact with the caregivers; increasing the clinicians’ understanding of the issues faced by family caregivers.