A person-centred approach to family carer needs assessment and support in dementia community care in Western Australia

Abstract

This feasibility study aimed to identify and address the support needs of family carers (FCs) of people living with dementia and to assess whether the use of the Carer Support Needs Assessment Tool (CSNAT) intervention in home-based care was acceptable and relevant to FCs. The CSNAT intervention comprised two FC support needs assessment visits, 7 weeks apart, plus associated actions addressing prioritised needs by the Client Care Advisors of a community care service in Western Australia in 2015. Telephone interviews were conducted with FCs on their experience using the CSNAT at the end of the intervention. Twenty-one FCs were involved in the intervention and 15 of them completed the feedback interviews. Care recipients had moderate to severe dementia. The top five support needs reported by FCs were: having time to yourself in the day; knowing what to expect in the future; practical help in the home; looking after your own health and dealing with your feelings and worries. Three themes summarised their experience: a straightforward structured approach; awareness, acknowledgement and acceptance of their situation; and provision of support. FCs appreciated the opportunity to be heard and acknowledged, to have their practical and psychosocial support needs facilitated, to identify what is important to them and to receive a response in a timely manner. The CSNAT approach offered a structured carer-led, person-centred, supportive intervention that facilitated discussion between the family carer and the service provider about support needs and strategies to address them.

The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups

“…As in previous Australian CSNAT studies undertaken in different settings, 16 , 19 , 27 time and workload capacity of staff, particularly in undertaking regular reviews of carer needs, was a challenge that was encountered in this study. One suggestion, that could have assisted prompting for reviews, is the tool having a scoring system to alert to severity of needs.…”

Palliative care for nursing home patients with dementia: service evaluation and risk factors of mortality

“…Individuals with dementia generally need complex long-term care involving a multidisciplinary approach and integration of medical resources [ 3 ]. The prevalence of dementia has increased in Western [ 1 , 3 , 4 ] and Eastern populations [ 5 ] owing to aging populations, with a marked effect on nationwide healthcare systems and a considerable socioeconomic burden [ 6 ].…”

Profiles of family caregivers of patients at the end of life at home: a Q-methodological study into family caregiver’ support needs

“…A recent study among family caregivers of people with dementia has shown that the top five support needs were more time off, knowing what to expect in the future, practical help in the home, support with their own health, and dealing with feelings and worries. Most of these support needs are related to direct support for the family caregiver rather than support to help them provide care, implying that family caregivers should also be seen as co-clients [18]. However, healthcare professionals generally have a more clientcentred approach in which they focus on the needs of the patient, and the family caregiver's support needs can easily be overlooked [18,19].…”

“…Most of these support needs are related to direct support for the family caregiver rather than support to help them provide care, implying that family caregivers should also be seen as co-clients [18]. However, healthcare professionals generally have a more clientcentred approach in which they focus on the needs of the patient, and the family caregiver's support needs can easily be overlooked [18,19]. Thus, despite efforts made by healthcare professionals and volunteers, family caregivers' support needs often remain unmet [8,14,20].…”