Supporting families to adjust to a diagnosis of dementia: a feasibility study of the adapted LivDem intervention
Dementia
LivDem-Families is a psychosocial intervention where a person recently diagnosed with dementia and their partner and/or family members meet with a facilitator to talk about their diagnosis, its impact on them all and how to live well with dementia now and in the future. It is made up of five 90-minute sessions, where the person diagnosed with dementia and those who support them can talk together about what is happening with a trained facilitator. The aim of LivDem-Families is to support adjustment to the diagnosis so that whole family can cope better now and plan for the future. As this is a feasibility study to test acceptability, participants will not be randomised but will be identified as eligible by the NHS dementia services who already support them. In addition to taking part in the intervention, all family members will be asked to complete a series of outcome measures before and after taking part in the LivDem-Families. They will also be invited to take part in a follow-up research interview to explore whether they found LivDem-Families to be acceptable and feasible. NHS staff who are delivering LivDem-Families will also be consented into the study as participants and will complete an outcome measure before and after delivering the intervention regarding how LivDem families impacts their work. They will also be invited to a focus group to explore whether they found it to be acceptable and feasible to deliver LivDem-Families in their NHS service.
Person with dementia: 1. They must have a diagnosis of one of the following: 1.1. Alzheimer's disease 1.2. Vascular dementia 1.3. Lewy Bodies dementia 1.4. Mixed dementia 2. This diagnosis was received between 3 months and 2 years ago. 3. They must be currently receiving dementia support from Bristol Dementia Wellbeing Service or Somerset Foundation Trust. 4.They must be over the age of 60 years when they are referred for the LivDem-Families intervention and not in paid employment. 5. They must have a mild to moderate level of cognitive impairment and be, to some extent, able to reflect on and communicate their experiences. 6. They must be judged by a member of the clinical team to have achieved some degree of adjustment to their dementia as evidenced, for instance, by a score of at least one on the RADIX screening instrument or by an ability to acknowledge, at least at times, that their cognitive problems are more than those caused by old age. 7. As this is an intervention which relies heavily on verbal communication and clinicians in this trial are English speaking, participants must be fluent in English. We recognise this means certain groups of people will be excluded from this research study. To rectify this, once the intervention is established in English we will explore options for how this service can be provided equitably (e.g. by community organisations being trained in and delivering LivDem-Families). 8. They must have the capacity to provide informed consent and willing take part in the study. This will be reviewed at each contact. 9. They must want to talk about dementia with their partner or family members. Family member: 1. Has a family member(s) who is living with dementia who wishes to take part in the study and meets the inclusion criteria. If the person with dementia is regularly supported by a close friend with whom they have a good relationship, the intervention could then be delivered with the person and their
Person with dementia: 1.They do not want to talk about dementia at all or become extremely upset when this topic of memory problems or dementia is raised. 2. They do not wish to talk about dementia with their partner or family members. 3. They have severe pre-existing mental health problems. For example, extremely high levels of anxiety, very low mood/severe depression, severe agitation or psychosis. In this case other sources of support will be explored e.g. other interventions offered by the service. 4. They have a significant history of trauma (e.g. abusive relationships). 5. There are risks of harm to self or others. This assessment of this criteria will be supported by standardised measures, such as the Patient Health Questionnaire (PHQ-9) which has a question regarding thoughts of harming oneself over the last two weeks. Also, clinicians will have access to care notes and risk assessments for their service users and can check if there have been previous risk concerns. If there are concerns about safeguarding, clinicians will follow their local procedures with support from the research team. 6. There are significant pre-existing relationship problems within the couple or family. If there are safeguarding issues, clinicians will follow their local procedures. If not, we will consider referral to local relationship support services. 7. They are currently receiving another psychosocial intervention such as counselling or psychotherapy. 8. They must have some ability to take the perspective of others and to empathise with their position. 9. The person has neurological impairment which affects their ability to understand the point of view of somebody else and empathise with their position. NB while we will assess this on a case-by-case basis, we recognise that people who have been diagnosed with Behavioural-Variant Frontotemporal dementia (BV-FTD) (which is associated with executive deficits and thus difficulties with empathy and perspective tak