Title: A Pilot Randomised Controlled trial to compare changes in quality of life for participants with early diagnosis dementia who attend a "Living well with dementia" group compared to waiting-list control
Funder: Department of Health (England)

Abstract: Background Dementia affects 700,000 people in the UK and can cause severe stigma and social isolation for those affected and their families.The National Dementia Strategy “Living Well with Dementia” therefore recommends the provision of peer support networks to provide information and support to people with dementia in the period immediately after a diagnosis has been made. One way to provide this is through a group intervention based on a mental health recovery model The concept of recovery has been central to the development of services for people with mental health problems in recent years. However it has been less widely used with people with dementia. This study assesses the impact of a 10 week recovery group called Living Well with Dementia for people with dementia and their families Aims The main research aim is to evaluate whether the living well with dementia group is more effective than a waiting list control in improving the quality of life of people who have been recently diagnosed with dementia This initial pilot study would: • train 6 memory clinic nurses to provide the living well with dementia group to people with dementia; • collect information to prepare for a future full randomised controlled trial (e.g. relating to blinding, take up rates, effect size and attrition); • carry out a qualitative analysis of participants and carers’ experiences, including the acceptability of the intervention and the assessment process. Following the pilot, we will submit a proposal for a substantive, multi-centre randomised control trial Plan of Investigation Nurses working at 6 centres across 2 NHS Trusts will be trained and supervised in carrying out the Living Well with Dementia group. PARTICIPANTS who have recently received a diagnosis of dementia will be randomly allocated to either a Living Well with Dementia group or to a waiting list control arm with 30 participants in each arm. DATA COLLECTION will be blind to intervention status and will occur at the start and end of the intervention and after follow-up. The primary outcome measure is quality of life. Acceptability of the intervention and the assessment to participants will be explored through semi-structured interviews. Data from this study will inform a future full trial. RESULTS from the pilot trial will be reported using guidance outlined in the CONSORT 2010 statement Potential Impact This research will contribute to the evaluation of the effectiveness of a standardised non-pharmaceutical intervention which could be routinely offered in memory clinics following a diagnosis of dementia. This would complement the other main intervention for this client group, Cognitive Stimulation Therapy, which is primarily aimed at improving cognitive ability. In contrast, the Living Well with Dementia groups, are based on a recovery approach and focus directly on emotional as well as cognitive issues in order to • help people understand and cope with their illness • overcome stigma • gain a sense of hope and meaning in life This approach may also benefit carers and since it is a group intervention it is likely to be cost-effective.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL