Dementia Mental and Behavioural Disorders
Conditions
Interventions
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
Sponsors
University of the West of England
Eligibility
Sex/Gender
All
Age
60 Years to 110 Years
Inclusion criteria
Inclusion criteria: 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 friend. 2. They want to talk about dementia with their partner, family member or friend who has a diagnosis of dementia. 3. They are to some extent able to empathise with the person living with dementia. For example, they show some understanding of the impact of what they say on the person with dementia.
Exclusion criteria
Exclusion criteria: 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 taking) are likely to be excluded from this this research. 10. The person has a diagnosis of mild cognitive impairment, stroke (without vascular dementia) or is awaiting diagnosis. This intervention is aimed at people who have a confirmed diagnosis of dementia. Family member: 1. They become extremely upset when this topic of dementia is raised. 2. 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 clinicians will consider alternative avenues for support in consultation with the research team. 3. They have a significant history of trauma (e.g. abusive relationships). 4. There are risks of harm to self or others. This assessment of this criteria will be supported by the Patient Health Questionnaire (PHQ-9) which has a question regarding thoughts of harming oneself over the last two weeks. If there are concerns about safeguarding, clinicians will follow their local procedures and consider alternative avenues for support such as community mental health services. 5. They are currently receiving another psychological intervention such as counselling or psychotherapy.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Feasibility and acceptability of the LivDem-Families intervention is measured using the Acceptability of Intervention Measure (AIM), Intervention Appropriateness Measure (IAM), and Feasibility of Intervention Measure during the follow-up research interview (up to 1 month after the final intervention session) | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. Awareness of dementia diagnosis and symptoms is measured using Section 1 of the RADIX completed at baseline and during the final intervention session by the person living with dementia. 2. Hope and resilience are measured using the Positive Psychology Outcome Measure completed at baseline and during the final intervention session by the person living with dementia. 3. Self-compassion is measured using the Self-compassion Scale Short Form completed at baseline and during the final intervention session by both the person living with dementia and their family members. 4. The quality of social relationships within the family is measured using The EVOS questionnaire completed at baseline and during the final intervention session by both the person living with dementia and their family members. 5. Caregiver’s competence in dealing with caregiving is measured using the Short Sense of Competence Questionnaire completed at baseline and during the final intervention session by the family members of the person living with dementia. | — |
Countries
England, United Kingdom
Contacts
Public ContactRichard Cheston
Outcome results
None listed