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In this blog, Public Engagement Officer, Shona Forster, shares early feedback from a patient and stakeholder engagement project aiming to understand the health and wellbeing needs of people with mild cognitive impairment (MCI).

In this blog, we share early feedback from a patient and stakeholder engagement project aiming to understand the health and wellbeing needs of people with mild cognitive impairment (MCI). It has shown that the effects of MCI on everyday life are not as ‘mild’ as the name suggests. Patients talked of the adaptations they make to cope with the condition, many of which have damaging consequences for health and wellbeing. Social prescribing may provide support to help mitigate such consequences, although the full implications for people with MCI have yet to be explored.

Why this project?

MCI is commonly depicted as difficulties with memory or thinking that are greater than expected for a person’s age, but which do not interfere with day-to-day life. However, patient perspectives reported in the literature, and from public engagement events we have run, highlight adverse health and wellbeing outcomes as a result of the condition. We are members of the Oxford Social Prescribing Research Network, and our initial public engagement activities have suggested an opportunity for social prescribing to connect people with MCI to local groups, organisations or activities that may support their practical, emotional or social needs. 

We are now in the process of undertaking a patient and stakeholder engagement project, to increase our understanding of the unmet needs and priorities of people with MCI, with a focus on how social prescribing may help. Here, we present some initial things we have learnt from consulting with ‘contributors’ to the project (i.e. people with MCI).

There is a risk of “disappearing as a person”

Contributors felt that the symptoms of MCI had a significant impact on their day-to-day life. Whilst symptoms vary, some individuals found it had become more difficult to hold a conversation because they could not find the words or they got muddled with what they said. Contributors to our project noted that getting out and about had become harder, as they forgot directions to familiar places and sometimes gave up driving. One person described having to find alternative ways of continuing with her favourite hobby, choosing online videos over printed instructions. Such symptoms can sap confidence and contribute to anxiety and apathy. People might then withdraw from social activities, which contributors understood could be damaging to their health and wellbeing. One talked of the risk of “disappearing as a person” as connections with society shrink.

Certain personality traits and support networks may reinforce patient resilience. Contributors who talked of being open about the condition with others, and who were naturally optimistic personalities, appeared better able to persevere with their normal daily activities. It also appeared that those with a strong support network of family and/or friends, who were encouraging and facilitating, were better able to cope. However, neither personality nor support network completely overcomes the damaging impact of MCI on lives.

The social prescription is key

Social prescribing may be one means of mitigating the damaging impact of MCI outlined above. Contributors liked the idea of having access to a link worker to support them with their health and wellbeing; indeed, the greater the need for support, the warmer the reaction. They noted that a GP referral might help to reach more socially isolated people. 

The social prescription itself or an ‘offer’ – what people were referred to in the community to support their wellbeing – created a lot of discussion. People wanted to be convinced that activities would be “worth doing”, both in terms of their appeal and their quality. Most contributors rejected the idea of engaging with a social prescribing offer simply to get out and about. They felt an offer must be enjoyable or have some evidence of efficacy in the context of their health or wellbeing needs. Confidence-boosting was identified as important to encourage engagement with the social prescription. Some contributors suggested a buddying service could be helpful in this respect; this is something we also found in previous work we conducted on social prescribing for older people and the cultural sector’s role in this.

Patient needs and the philosophy of social prescribing

People expected a link worker to provide advice about activities that might be beneficial to their memory, anxiety or social isolation. They did not feel they had all the answers themselves and looked to professionals for support and guidance. This appeared to be the case not only for people with a tendency to delegate healthcare decisions to the medical profession, but also for those who had been accustomed to taking more ownership of their health. In this respect, it is important to explore whether patient expectations of receiving advice align with the social prescribing philosophy of empowering people to help themselves.

It is also important to consider how social prescribing might encourage people to try new things. The buddying service, suggested above, may imply a longer-term relationship with 

a link worker than social prescribing programmes currently offer.

What’s next?

We have more patient contributors to consult before collating the findings in a short film. Memory clinic clinicians, GPs and link workers will be invited to share their perspectives on what they hear and on the potential of social prescribing to help people with MCI. If you are interested in learning more or wish to play a role in this project, contact Shona Forster (shona.forster@psych.ox.ac.uk) who is leading this work.

Team members

Shona Forster, Public Engagement Officer, Department of Psychiatry

Caroline Potter, Senior Research Fellow, Nuffield Department of Population Health

Vanessa Raymont, Senior Clinical Researcher and Consultant Psychiatrist

Clare Mackay, Professor of Imaging Neuroscience, Department of Psychiatry

Stephanie Tierney, Senior Researcher, Centre for Evidence-Based Medicine

 

We are grateful to NIHR Applied Research Collaboration Oxford and Thames Valley at Oxford Health NHS Foundation Trust and to Oxford Academic Health Partners for funding the project. The views expressed are those of the authors and not necessarily those of their host institutions or these funders.