Understanding the impact of UnityDEM - an evaluation study
Research type
Research Study
Full title
Understanding the impact of UnityDEM for people with early stage dementia and their carers when compared to 'Treatment as Usual' (TAU)
IRAS ID
262301
Contact name
Mary Burton
Contact email
Sponsor organisation
University of Northampton
Clinicaltrials.gov Identifier
UNITYDEM1, UNITYDEM1
Duration of Study in the UK
0 years, 4 months, 31 days
Research summary
The study will focus on the lived experience of individuals with a diagnosis of Dementia and their Carers. Baseline data from the point of diagnosis will be obtained alongside with data gained during this study.
In March 2018, the University of Northampton launched the UnityDEM Centre Project. A team of three staff, a qualified Occupational therapist and two project workers, are supported by UoN student/staff volunteers provide an enjoyable, flexible and adaptive programme of holistic support and informative activities in a non-medical community venue up to three days per week to 20 people recently diagnosed with dementia (within the previous 12 months) and their carers. The activity programme is delivered to members from 10 am-4pm on a Monday and Wednesday, and some Fridays in the month. A ‘typical’ day will always include:-
1. Welcome/information giving session;
2. Cognitive Stimulation Therapy session for Person with Dementia (PwD);
3. Shared lunch-time for all members and staff
4. Physical activity for PwD and Carer;
5. Creative activity for PwD and carerIn addition, once per month, a qualified OT or MH nurse provides a Carer’s Support workshop; the Co-ordinator provides a programme consultation and review meeting for each couple; and there is usually an external community-based activity planned for ‘Funday Friday’ (as a minimum). A specialist Admiral nurse has also been attending UnityDEM once per month to provide individual appointments for couple. This has been funded and evaluated separately to the main project, but has been an integral element of the overall package being delivered.
UnityDEM has been running for 14 months, during which all elements of its on-going development and delivery has been formerly evaluated. The evaluation has employed a mixed method design to try to ascertain whether “the provision of a 12 month community-based psychosocial support programme (UnityDEM) for people newly diagnosed with dementia provides a meaningful programme of activity to maintain independence, quality of life and, social and community engagement in the everyday lives of people with dementia and their carers?
Employing a mixed method design, all participants were self-selecting in terms of both participating in the project and giving informed consent for the Evaluation. The Evaluation Protocol was subject to ethical review: Application reference number: FHSRECSS000127.
Building on routinely collected data, mid and post intervention measures have been taken with the people with dementia. These are:
• Addenbrooke’s Cognitive Examination (ACE-III, Noone, 2015)
• Dementia Quality of Life Measure (DEMQoL) and DEMQol Proxy, (Smith et al., 2005)
• Bristol Activities of Daily Living, (Bucks et al, 1996)
• Model of Human Occupation Screening Tool (MOHOST) (Sue Parkinson, Kirsty Forsyth, & Gary Kielhofner, 2006)
• Occupational Self Assessment(OSA) (Baron, K. 2006)Carers have also completed the UnityDEM Carers questionnaire which covers questions on:
• Well-Being Index (WHO-5, WHO Collaborating Centre in Mental Heal Unit, 1998);
• Engagement with services;
• Maintaining social connections (Community Integration Measure, McColl et al 2001)
• Quality of life (AC-QoL, Elwick et al., 1988);
• Brief history of the dementia diagnosis (e.g. date of diagnosis);
• Knowledge of dementia and information sources.Two focus groups have also been conducted with carers. In addition, an initial review of UnityDEM has also been undertaken to identify the process of setting up and delivering the service. This has included:-
• Session plans and notes;
• Staff diary of activity and impact to include:
o Accounts of stories of impact during session;
o Number attending sessions;
o Levels of participation;
o Levels of engagement or non-engagement.Cost analysis of UnityDEM (e.g. cost per individual to attend, staff and volunteers, premises and materials) has been completed.
Having completed the evaluation, the team would like to compare the findings from the evaluation to a sample from another part of the County, Daventry. The sample would meet the same essential criteria for the project, and been assessed in exactly the same way by the same Memory Assessment Service (MAS) at diagnosis as the UnityDEM members, but they would not had access to the Northampton town based UnityDEM Project.
We therefore propose to undertake the same measures as completed in the evaluation, but would also seek to understand what care and support they have been able to access, which we will term ‘treatment as usual’ (TAU).
Therefore, approval is being sought to try to further ascertain if the provision of a community based psychosocial support programme impacts upon cognitive function (ACE-III) quality of life (MOHOST, OSA, DEMQol and BADLS) and social and community engagement of people newly diagnosed with dementia and their carers, by comparing their experience to that of a similar cohort receiving ‘TAU’.
REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
19/WM/0323
Date of REC Opinion
26 Jan 2021
REC opinion
Further Information Favourable Opinion