Journeying through Dementia
Research type
Research Study
Full title
A randomised controlled trial of the clinical and cost-effectiveness of the Journeying through Dementia intervention compared to usual care
IRAS ID
199383
Contact name
Gail Anne Mountain
Contact email
Sponsor organisation
Sheffield Health and Social Care Foundation Trust
Duration of Study in the UK
2 years, 11 months, 31 days
Research summary
Summary of Research
There are few provenly effective services available for people with mild dementia. This study explored the potential benefit of a programme called Journeying through Dementia. The content was devised by consulting with people with dementia. It aims to help individuals to continue to live well and participate in life. The programme involves participants meeting in groups of about eight every week for 12 weeks. Each person also has four face-to-face meetings with a staff member leading the group. Carer participation is optional; they can be invited to three of the 12 group meetings and all four face-to-face meetings.
Improving the care for people with dementia is a national priority, however to date there has been little research into how to support people to manage their dementia, particularly people in the early stages of dementia.This study seeks to evaluate the effectiveness and cost-effectiveness of a self-management group intervention called Journeying through Dementia, for people in the early stages of dementia.
People with dementia will be recruited from 10 localities, including through NHS services, third sector organisations and general promotion. The aim is to recruit 486 people with dementia. Participants can also choose for their supporter e.g. family member or friend (sometimes referred to as a carer) to also participate but this is not essential.
Participants will be randomly allocated to receive either usual care or usual care plus the Journeying through Dementia intervention (the intervention group).
The Journeying through Dementia intervention consists of 12 group facilitated sessions and 4 individual sessions with a facilitator. The sessions will cover issues such as managing dementia, re-engaging with hobbies and healthy living. Participants can bring along a supporter to some of the sessions.
People with dementia will be asked to complete outcome measures at baseline, 8 months and 12 months post randomisation. Participating supporters will be asked to complete outcome measures at baseline and 8 months post randomisation.
The study will investigate whether there is greater improvement in the health of the intervention group compared to the usual care group and whether the intervention is good value for money.
Summary of Results
A total of 480 people with dementia and 350 carers from 13 locations in England took part. Just over half were randomly allocated to be offered the programme, while the others were not. This allowed us to compare the groups.We were interested in whether attending the Journeying through Dementia programme improved participants’ quality of life but results showed that it did not. We also assessed participants’ mood, self-management skills, positive attitude and ability with daily living skills, but only one measure of positive psychology indicated benefit from the programme. It is therefore unlikely to be worth the cost. However during interviews some participants described being more confident, enjoying social contact, trying new activities, feeling valued, and having increased independence.
REC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
16/YH/0238
Date of REC Opinion
1 Jul 2016
REC opinion
Further Information Favourable Opinion