Impact of Memory Problems Post-stroke on Patients and Their Family Carers: A Qualitative Study

Abstract

Background: Memory problems post-stroke are common and for some, these problems could then progress to a dementia illness. Once in the community, stroke-survivors are looked after by their family doctors although there is evidence that these patients may struggle to access appropriate help in the community for these problems. Although a stroke-survivor may be physically capable of performing daily tasks, they and their families may have to learn to manage and adapt to their new memory deficits. There is often less focus on cognitive recovery post-stroke from clinical services perhaps because of the lack of awareness and evidence of these adaptations. There is also good evidence that organized stroke care improves physical recovery but no equivalent evidence for the effectiveness of cognitive rehabilitation. The aim of this qualitative study was to report the impact of memory problems on the stroke-survivor and their family once they are living in the community. Methods: Semi-structured interviews were conducted with patients and family carers to gain an in-depth understanding of their experiences. Participants were invited to take part in an interview at around six and 12-months post-stroke. A topic guide was developed to explore participant's care experiences post-stroke when they have also presented with memory difficulties. Data collection and analysis were iterative; all transcripts were anonymized. The data were thematically analyzed. Results: Twenty-two interviews were conducted. Five family carers and ten stroke-survivors were interviewed at six-months post-stroke, of these eight stroke-survivors and four family carers agreed to a 12-month follow-up interview. They identified several areas of impact: (1) impact on daily life; (2) emotional impact; and (3) compensating strategies implemented in response to impact. Conclusion: Living with stroke combined with memory impairment can have negative effects on the stroke-survivor and their family once in the community. Health professionals and services in the community need to recognize the burden of managing symptoms post-stroke for these individuals and their families. Understanding the impact can enable more effective community and specialist support to be provided particularly if we were to also identify those who may then be at risk of a future dementia illness.

The Effects of Self-Efficacy on Cognitive Function in Patients with Acute Stroke: Verification of the Medicating Effect of Family Support

“…This support reduces emotional distress in stroke patients and allows them to positively embrace trauma experiences and implications [10,15,18]. For stroke patients with limited performance in their daily lives, families, as an important resource that most directly provides help after discharge, stimulate patients' rehabilitation motivation for disease relief and recovery [19,20]. In this study, family support and cognitive function in acute stroke patients were significantly correlated, which can be interpreted to mean that family support can enhance the recovery of a patient from both physical dysfunction and cognitive dysfunction based on the belief and trust gained from those around him.…”

Informing Patients with Acute Stroke About their Risk of Dementia: A Survey of UK Healthcare Professionals

“… 17 Patients and caregivers also reported that memory problems after a stroke negatively affected their daily life and emotions. 18 If risk of future cognitive problems are not identified during the acute hospital stay they may not come to medical attention until there is a crisis.…”

Exploring the perspectives of key stakeholders on the design and delivery of a cognitive rehabilitation intervention for people post-stroke

“…Living with memory deficits may result in negative effects on the PpS and their family once in the community such as fragmented care, marginalisation and lack of proactive follow-up [ 29 ]. A recent systematic review and meta-ethnography found that PpS and carers may feel abandoned by healthcare services due to lack of continuity of care, limitations in access to services and inadequate information and opportunity to re-engage with services [ 30 ].…”