Research Design

1
CArers of people with Dementia Empowerment and
Efficacy via Education Miss Despina Laparidou,
Dr Jo Middlemass, Professor Terence Karran, Dr
John Hudson, Mr Paul Mansfield, Professor Niro
Siriwardena, Dr Karen Windle
CADE3

• 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 Alzheimers
  disease (AD).
• Secondary aim explore the perceptions and views
  of healthcare professionals, carers and patients
  on psychoeducational/monitoring interventions.

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.
Research Questions
Phase B
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?
Focus Groups and Interviews with carers their
care-recipients

• Preferences on future psychoeducational
  interventions,
• Perceptions of the feasibility of the proposed
  intervention,
• Advantages, disadvantages and implementation of a
  psychoeducation/monitoring intervention.

Phase C

• 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.

• Research Design
• Mixed methods
• Systematic Review,
• Qualitative study,
• Interviews focus groups with service users,
• Interviews focus groups with healthcare
  professionals.
• Leading to a feasibility study.

• Phase D
• Feasibility study
• - Based on results from
• Systematic Review,
• Qualitative study with carers,
• Qualitative study with health care professionals.
• Randomized Controlled Trial.

Contact Information Despina Laparidou, Research
Assistant, Email dlaparidou_at_lincoln.ac.uk, Tel
01522 837407 Dr Jo Middlemass,
Lead Researcher, Email jmiddlemass_at_lincoln.ac.uk,
Tel [phone]