'I know his needs better than my own' – carers’ support needs when caring for a person with dementia

• Published in: Scandinavian journal of caring sciences 2021-06, Vol.35 (2), p.586-599
• Main Authors: Clemmensen, Trine Holt, Lauridsen, Henrik Hein, Andersen‐Ranberg, Karen, Kristensen, Hanne Kaae
• Format: Article
• Language: English
• Subjects: Activities of daily living; Alzheimer's disease; Alzheimer’s; caregiver; Caregivers; Caregiving; carer; Dementia; Empirical Studies; Focus groups; Interviews; needs assessment; Nursing; Physical disabilities; Quality of life; service needs and interview; support needs
• ISSN: 0283-9318; 1471-6712
• DOI: 10.1111/scs.12875

Background Caring for a person with dementia predisposes informal carers (carers) to mental and physical disability. Carers tend to focus on the needs of the person with dementia and have difficulties expressing their own needs for support. No instrument has yet been developed to directly assess carers’ support needs. The aim of this study is to clarify the main categories of carers’ support needs to inform future development of an instrument to assess carers’ support needs. Methods A qualitative approach combining focus group interviews with carers and professionals and individual interviews were used. Results Carers’ support needs were categorised into four areas: (i) daily life when caring for a person with dementia, (ii) focus on themselves, (iii) maintain own well‐being, and (iv) communicate and interact with surroundings. Discussion Carers have support needs in common regardless of the relation to the person with dementia. Carers tend to focus on the needs of the person with dementia, thus not knowing their own needs. The four main categories clarified in this study may inform the foundation of developing an instrument to facilitate dialogue between carers and professionals with the purpose of assessing carers’ support needs.