I recruit and collect data from research participants living in the community/ at home within travel distance to three sites in Denbighshire as part of this large study. We had NHS ethical approval to recruit through GP surgeries and the protocol listed the strategy that should be followed. So how did it work on the ground?
As 2014 began we were aiming to recruit 42 people with dementia to join weekly art groups and ensure they are happy to take part in the research process. The four groups would run sequentially for 12 weeks each, allowing time for recruitment and data collection over the 12 months, with the first group meeting in June 2014. As half of the county’s population live in the coastal towns we started recruitment in the Rhyl and Prestatyn areas. Unfortunately this is also a popular location for retirement homes (which were an exclusion criteria in our study!). The third and fourth groups were located in more rural towns with a more dispersed population in Ruthin and Llangollen.
I estimated that we needed to work with a total GP patient list of 76,000 to meet the research target, quite a task when Denbighshire’s total population is 94,000. Armed with my NHS Research passport and support by NISCHR CRC (now called Health Care Research Wales) we asked surgeries located within the areas of the groups to support our recruitment. Two important elements that facilitated this were the Welsh Assembly encouragement for surgeries to be ‘research active’ through the PiCRIS scheme and the excellent relationship between NISCR CRC and Practice Managers. Supportive surgeries allowed us to screen their database for suitable patients and these were further checked by the GPs. Following the GP screening a letter of invitation was sent out in the GP’s name offering identified patients the opportunity to join the research.
Other studies were in progress in the area, so this required open communication with other researchers recruiting people with dementia. A register had been established for people to opt into research. However, many of the participants were already committed to other studies and many lived too far to travel to our groups, so take up was initially low. Hopefully the recent launch of Join Dementia Research will encourage more volunteers.
I worked alongside some fantastic memory clinic staff in the three areas. Their knowledge of the people attending their clinics helped identify suitable patients and ensured that interested patients received further information.
The Alzheimer’s Society have established a strong presence in supporting people through advice and activities and I was fortunate to meet an enthusiastic group facilitator - who invited me to visit their ‘Singing for the brain’ and ‘Memory café’. This was an opportunity to meet people who were keen to ‘do something’ and meet people that were ‘in the same boat’.
If anyone expressed an interest in the study they sent a reply slip to us. This was followed up with a telephone call and a detailed patient information sheet was posted. Home visits were finally arranged to discuss the study and to obtain ‘informed consent’ and completion of the first batch of questionnaires.
Carers were also recruited to fill in questionnaires at the same three times in the study (before the first group meeting, after the last meeting and 3 months after the group finished). We invited carers to attend our first meeting when we explained the study and collected observations of the members in a group. This meeting felt like a hand over of the group members into the care of the art team, ensuring that any health conditions were brought to the attention of staff leading the art sessions beforehand.
I also baked furiously before each first meeting - ensuring that plentiful supplies of tea and homemade cake were available to keep everybody happy.
For the following twelve weeks the person living with dementia came to the group in taxis arranged by the art team. They met for two hours every week in a gallery setting looking, discussing and creating their own pieces of art inspired by the exhibition. As researchers we collected observations and feedback in seven of the twelve group meetings and as soon as a one group started it was time to recruit the members for the next group.
In the twelve months of recruitment to the study I travelled over 13,000 miles, worked with 14 GP practices, screened 855 patient notes, sat in 3 different Memory Clinics and visited 18 different support groups. Information and invitations were sent to 558 people living with dementia. 74 people requested further information and 53 consented to join the study with 47 attending the group. We also recruited 46 carers to the study.
We would not have succeeded without the excellent good will of staff working in the NHS and in charities supporting people with dementia in the community. At a time of a negative press I’d like to celebrate the excellent work done on the ground by people trying their best to make a difference in the lives of people living with dementia.