Development of a group-based support and information intervention for people with DLB and their caregivers

Background:
Dementia with Lewy bodies (DLB) is a complex condition. Awareness within the general population is limited and diagnosis can be protracted. Consequently, people with DLB and their families often feel under supported and isolated. Caregivers experience a significantly greater burden and lower quality of life than with other dementias due to the impact of hallucinations, mood disturbances and cognitive fluctuations. Effective DLB focused provision is paramount given the limitations of pharmacological solutions. However psychological support is often minimal and research on this topic is negligible. The objective was to investigate the acceptability and feasibility of a short, group-based, psycho-social support and information intervention aimed at increasing the coping ability of people living with DLB and their caregivers.
Methods:
Dyads consisting of participants with a recent DLB diagnosis and informal caregivers attended three to four sessions lasting two and a half hours, held weekly within a memory clinic. Provision was reinforced by a take-home manual. Dyad were separated into caregivers and people with DLB at times for tailored delivery. Content comprised information around cognitive, behavioural and physical changes to equip people to recognise, understand and respond to DLB specific challenges including ways of maintaining a positive outlook. People living with DLB covered symptom management, peer engagement, exploring feelings and goal planning. Caregivers addressed issues including managing behavioural difficulties, planning ahead and meeting their own needs, including managing personal anxiety and uncertainty. Knowledge sharing between attendees was encouraged. Participants completed assessment measures and post-intervention interviews.
Results:
Thirty two participants (sixteen dyads) attended over three groups. Attendance was 73% with attrition predominantly attributable to illness or caregivers’ work commitments. People with DLB and caregivers were highly satisfied with the structure including session numbers and length. The separate delivery of some topics was popular with both dyad members. Session content was well received, with many participants highlighting the importance of specifically DLB focussed face to face information after difficult journeys through the diagnostic pathway. Peer contact was also highly valued with most participants knowing no-one with DLB previously. People living with DLB described benefiting from sharing experiences with others in similar situations, and becoming more informed. Three quarters of caregivers identified feeling more able to cope in eight or more of thirteen areas covered, most notably understanding visual disturbances, and changes in thinking abilities.
Conclusion:
This study has established the acceptability and feasibility of a support and information package uniquely focussed on DLB, designed both for people with this condition and caregivers. The indication of benefits, particularly in caregiver coping, offers scope for larger scale formal testing to determine effectiveness. With training, this intervention is deliverable by non-DLB specialist health professionals within primary care, where memory support services are commonly located, using the session manual to ensure replicability and minimise fidelity loss. Attendance could provide participants with increased understanding and effective coping strategies thus mitigating some of the difficulties unamenable to pharmacological solutions, which generally increase as the condition progresses. This may have the impact of reducing demands on health and social care.