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Research DesignMixed methods:
Systematic Review, Qualitative study,
• Interviews & focus groups with service users,
• Interviews & focus groups with healthcare professionals.
Leading to a feasibility study.
Background
The major issues faced by carers of people with Dementia include:
• Psychological distress (depression and anxiety, lower self-efficacy, feelings of entrapment and guilt);
• Physical strain, fatigue, burnout;
• Poor coping skills, social isolation and lack of support;
• Legal and financial matters;
• Communication, safety and organisation in the home.
Psychoeducation, skill-building programmes and multi-component interventions, that include active participation of carers and care recipients, produce the most significant results for carers.
• Benefits include: increased caregiver knowledge; reduced stress and depression levels; increased coping ability; increased self-efficacy; delayed residential care placement.
Carers are: • Able to identify subtle behavioural changes in people with
dementia;
• Invaluable sources of information, concerning the health of those in their care;
• Ideally placed to assess and monitor the patient with dementia from initial suspicions of changes in behaviour, to ongoing monitoring progress and medication.
Locally, a Consultation Evaluation Report highlighted the following areas that matter to people with dementia and their families:
• Being involved in decision making on treatment and care,
• Being given better information about the potential effects of dementia and the help and advice available.
Using carers in a more formal monitoring role is an under-researched area.
Phase A
Evidence-base around psychoeducational interventions for carers of people with dementia.
Main aim: systematically review the literature on interventions that individually or in combination have been shown to be effective/cost-effective for improving outcomes for carers and patients with dementia, and particularly Alzheimer’s disease (AD).
Secondary aim: explore the perceptions and views of healthcare professionals, carers and patients on psychoeducational/monitoring interventions.
Phase C
Contact Information: Despina Laparidou, Research Assistant, Email: [email protected], Tel: 01522 837407; Dr Jo Middlemass, Lead Researcher, Email: [email protected], Tel: 01522 886226
Aim The overarching aim is to improve carer and patient outcomes by developing a psychoeducational intervention for carers of people with dementia, with an emphasis on carers undertaking a more formal monitoring role.
Phase B
Phase DFeasibility study:
- Based on results from:
• Systematic Review,
• Qualitative study with carers,
• Qualitative study with health care professionals.
Randomized Controlled Trial.
Preferences on future psychoeducational interventions,
Perceptions of the feasibility of the proposed intervention,
Advantages, disadvantages and implementation of a psychoeducation/monitoring intervention.
Focus groups and interviews with healthcare professionals: Perceptions, views and attitudes to carer input into
monitoring; What factors would enhance their readiness to accept the
results of formal monitoring by carers.
What psychoeducational interventions have been found to be effective for carers of people with dementia?What psychoeducational interventions have been found to be cost effective?What patient and carer outcomes have been measured in studies of psychoeducational interventions?What research is there, if any, on the effect of carers of people with dementia using validated instruments to monitor the progression of dementia?What are the perceptions and views of carers and patients on potential psychoeducational and monitoring interventions?What are health professionals’ perceptions and views of a formal monitoring role for carers of people with dementia?
Research Questions
Focus Groups and Interviews with carers & their care-recipients:
