Post-stroke memory deficits and barriers to seeking help: views of patients and carers

Memory and cognitive deficits post stroke are common and associated with increased risk of future dementia. Rehabilitation tends to focus on physical recovery; however, once in the community, it is unclear what happens in the longer term to the stroke-survivor with new memory difficulties.

The aim of this qualitative study was to examine in stroke-survivors what factors influence contact with health professionals.

Semi-structured interviews were conducted with stroke-survivors and their family carers where memory difficulties were reported at 6 months post stroke. A topic guide was used which sought to critically examine participants care experience following their stroke diagnosis. All participants were interviewed at baseline (around 6 months post stroke) and offered an interview at around 12 months post stroke. All interviews were conducted in the North East of England. All transcripts were coded and thematically analysed.

Ten stroke-survivors (age range 72-84 years) were interviewed alongside five carers at baseline; eight stroke-survivors and four carers agreed to a follow-up interview. Three main barriers were identified: (i) fear of a dementia diagnosis; (ii) denial or minimization of symptoms leading to adaptation and (iii) obstacles to seeking help in the community.

With an ageing population and increase in stroke-survival, the burden of post-stroke cognitive impairment and dementia will only increase. Stroke-survivors and their family carers in this study have identified issues that may hinder their presentation to health care professionals at a personal and organizational level. Health professionals need to be aware of these potential issues when planning services for stroke-survivors.