The experience of family carers of people with dementia who are hospitalised

Abstract

Hospital admission of a person with dementia can have a significant impact on the family carer, who temporarily relinquishes caring to health professionals. A descriptive qualitative design using in-depth interviews with a conversational approach was used to elicit data. Adjusting to the change in the carer's role can be challenging and result in feelings of helplessness, loneliness, loss of control and being undervalued. Family support can assist with the transition but family conflict increases anxiety. Good communication between clinicians and the carer is vital. The carer should be included in decision-making as the 'expert' in the care of the person with dementia. This article discusses findings of a larger study specifically related to the emotional support required for the carers of people with dementia, who are admitted to hospital. The carer and the patient must be considered as a dyad in relation to discharge planning.

Hospital discharge processes involving older adults living with dementia: An integrated literature review

“…Our review found that family carers had limited confidence in their ability to manage the older person with dementia at home posthospital discharge. This may be in relation to studies suggesting that family carers are intimidated by the expert knowledge of health professionals (Bloomer et al, 2014;Emmett et al, 2014;Lindhardt et al, 2008). However, while clinicians may have expert knowledge, this is not readily translated to meaningful information to prepare the person for discharge.…”

“…Family carer participation was often limited by lack of confidence. Most family carers want to be acknowledged as a resource to benefit care delivery, but were intimidated by the decision‐making process and the “expert” knowledge exhibited by health professionals (Bloomer et al., ; Emmett et al., ; Lindhardt et al., ; Mockford, ). Three studies highlighted that health professionals lack the skills and/or time to effectively engage with family carers of older people with dementia and therefore families’ knowledge of the person's health and social circumstances was not used (Emmett et al., ; Jurgens et al., ; Mortenson & Bishop, ).…”

“…However, some doubt exists regarding the extent to which family carers are equipped to fulfil this critical safeguarding role and contribute objectively to discharge decisions that are in the best interests of the cognitively impaired adult (Emmett et al., ). Conflicts of interest can arise if the older patient's family and close friends hold divergent views to hospital staff (or each other), and if they wish to assert their own personal agendas (Bloomer et al., ; Poole et al., ).…”

“…A focus on risk influenced discharge processes and decisions for older people with dementia, with health professionals generally exhibiting a risk averse tendency (Bloomer, Digby, Tan, Crawford, & Williams, 2014;Emmett et al, 2013;Poole et al, 2014). Risk assessments of older people commonly focus on risk in relation to mental capacity and physical risks, and related to concerns regarding professional or organisational liability if things go wrong postdischarge (Astell et al, 2008;Rozzini et al, 2006).…”

“They take a lot of pressure off us”: Volunteers reducing staff and family care burden and contributing to quality of care for older patients with cognitive impairment in rural hospitals

“…Carer dissatisfaction about the care provided to people with dementia in hospital relates to perceived poor care, lack of understanding of the needs of the person with dementia, deterioration in the health and function of the person with dementia, and limited involvement of and communication with carers . Care burden and exhaustion can also be experienced by carers who stay and support the person with dementia when hospitalised …”