Community-dwelling frail older people’s views of frailty and frailty services: a qualitative study

Problem

As the population ages, growing numbers of older people may be considered ‘frail’. Many continue to live at home, and may experience significant need for health and social care. Despite the many clinical measures of frailty, there is no consensus on its clinical measurement. Furthermore, frail older people’s own experiences and perspectives are seldom heard. We need to understand how frail older people view ‘frailty’ so that we can develop services that meet their needs.

Approach

We conducted in-depth interviews with 14 community-dwelling older people (aged 75+) who receive frailty services and/or had been assessed as being frail. Qualitative methodology enabled a rich and detailed exploration of their views and experiences. Interviews took place at home or in community hospital, in diverse localities: Sussex, Birmingham, Leicestershire. Thematic analysis was conducted.

Findings

Four themes were identified. (1) ‘Living in an ageing body’. Ageing was experienced as gradual changes which were relatively easy to cope with, punctuated by falls and illnesses which posed threats to confidence, ability and independence. (2) ‘Adapting to preserve what is meaningful’. Our interviewees described how they had altered their routines and environments to keep doing what they enjoyed for as long as possible, and to maintain their independence. They adopted positive and/or determined mindsets, which served them well as they aged, and seemed to help them remain resilient through severe illness, injury, or bereavement. However, frequent falls and illnesses (‘one thing after another’) could be overwhelming. As health- and age-related changes occurred, their social relationships also altered: some family members, friends and neighbours became carers, and social circles typically shrank. (3) ‘Rejecting a frail, old identity’. To these ‘frail’ older people, ‘frailty’ conferred helplessness, (mental) weakness, and loss of dignity. Frailty was readily identified in others, but not so readily in oneself. Several interviewees described how they still felt young inside. People who we interviewed at home did not identify as frail, despite some being house- or bed-bound; whilst those interviewed in hospital sometimes reluctantly did. (4) ‘The paradox of accepting care’. For these ‘frail’ older people, who were still living at home, formal and informal care was acknowledged as enabling them to remain at home and thus preserve some independence. However, accepting care could also signify an acceptance of a trajectory towards dependence and residential care, which they did not want.A ‘frail’ identity posed an existential threat to community-dwelling older people. Accepting frailty services could undermine the strong mindset and identity which had sustained older people thus far.

Consequences

Attention should be given to how ‘frailty’ services and interventions are presented and delivered, to ensure dignity and autonomy are protected alongside physical safety.