Empowering Patients
Supporting patients to complete Join Dementia Research registration forms in clinic
Lancashire Care NHS Foundation Trust have become the first to achieve the Dementia 2020 Challenge objective that 25% of people who are newly diagnosed with dementia (in January 2019) registered on Join Dementia Research. This is due to Memory Clinic staff, led by Yvette Griffin (Team Manager at Fylde Coast Memory Assessment Service) and Laura Barnes (Service Manager at Fylde Coast Community Services), supporting their patients to complete Join Dementia Research registration forms in clinic. This initiative alongside sending out regular letters has proven to be one of the most effective ways in reaching patients.
Since April 2018 the Trust has been working with the NIHR Office of the National Director for Dementia Research, as a participant in the Embedding Research in Care (ERICA) Project.
Read the complete case study here
- Read the following document: Guidance for supporting volunteers to complete paper Join Dementia Research application forms
- Each person registering on Join Dementia Research is asked if they are interested in research, and then asked to complete the form in clinic.
- For people living with dementia, ensure the registration forms are completed, where possible, by the volunteer or representative of the volunteer themselves. A representative is someone who knows the volunteer well, sees them often and would be willing and able to attend research studies with the volunteer – ideally a partner, relative or close friend. If the volunteer is unable to give consent, the representative should be able to give consent on their behalf if they hold Power of Attorney for Health and Welfare.
- Staff can complete the forms for the patient, and explain the process, what will happen, and help with complex questions – the patient then reads the consent information and signs the form.
- Some friendly in-house competition can drive adoption of new behaviours.
Memory Clinic Mailing – the best way to spread awareness about Join Dementia Research
There was a 5% uptake, with more people registering on Join Dementia Research during the first 3 months following the initiative compared to the number who registered within the past year.
- Read the following document: Guidance for supporting volunteers to complete paper Join Dementia Research application forms
- Each person registering on Join Dementia Research is asked if they are interested in research, and then asked to complete the form in clinic.
- For people living with dementia, ensure the registration forms are completed, where possible, by the volunteer or representative of the volunteer themselves. A representative is someone who knows the volunteer well, sees them often and would be willing and able to attend research studies with the volunteer – ideally a partner, relative or close friend. If the volunteer is unable to give consent, the representative should be able to give consent on their behalf if they hold Power of Attorney for Health and Welfare.
- Staff can complete the forms for the patient, and explain the process, what will happen, and help with complex questions – the patient then reads the consent information and signs the form.
- Some friendly in-house competition can drive adoption of new behaviours.
Support at home – the key to signing up new recruits
She has spent the last eight months testing a range of different approaches and has identified one that is particularly successful – offering a home visit.
In 2016-2017, 818 people were recruited. Almost double the amount, compared to other trusts with a similar numbers of people with dementia, where they don’t make home visits.
- Identify the correct contact person or key gatekeeper in every organisation or voluntary group
- Compare and contrast the best communication tools for use across a given geographical area taking into account peoples preferences
- Understand that considerable time can be needed to agree wording on communication tools like leaflets or for questions in a questionnaire
- Keep the design and appearance of the questionnaire simple and ensure that the wording is clear and formulated in such a way as to engage the respondent
- Ensure that translated versions of the questionnaire are available for the most commonly used languages amongst your target population
