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Research overview
Systematic review

Interventions to support caregivers of people with dementia living in the community

Norwegian Knowledge Centre for Health Services was commissioned by the Ministry of Health to summarise the available research on interventions to support caregivers of people with dementia living in the community.


  • Issued/Revised: 2011
  • By: Norwegian Knowledge Centre for the Health Services
  • Dahm KT, Landmark B, Kirkehei I, Brurberg KG, Fønhus MS, Reinar LM. Interventions to support caregivers of people with dementia living in the community, Norwegian Knowledge Centre for the Health Services. Research overview 2011. ISBN (digital): 978-82-8121-399-9, ISSN (digital): 1890-1298. Available at www.fhi.no/en

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Key message

Background: Dementia Plan 2015 "Den gode dagen" aims to strengthen the quality, competence and capacity of services to people with dementia and their caregivers. One of the priorities is to provide support and counselling for the caregivers. In implementing the Dementia plan there is a need for increased knowledge about which interventions that are effective to support caregivers of people with dementia.

Aim : Norwegian Knowledge Centre for Health Services was commissioned by the Ministry of Health to summarize the available research on interventions to support caregivers of people with dementia living in the community.  

  • A multi-component intervention including psycho-education and support for caregivers may reduce caregiver burden and depression and increase subjective well-being.
  • Multi-component interventions by occupational therapist at home involving caregiver and patients seem to have a small effect on depression, quality of life and self-efficacy for caregivers.  
  • Individual psycho-education at home may reduce caregiver burden.
  •  Psychoeducation in groups, individual support and counselling at home or by telephone and support and befriending from volunteers have uncertain effect for caregivers.   

Few studies reported long-term effect. The majority of the included studies are conducted in the U.S. and Asia, where both culture and social structure is different than in Norway. It might be a challenge to transfer the results to Norwegian setting.

Summary

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Background
About 69 000 people in Norway are suffering from dementia in 2010. Dementia is a progressive disease and the incidence increases with the age. More than the half of people with dementia are living at home and about 80 percent of all residents in nursing homes have a dementia disorder. People with dementia present a large user group in the care services. If the incidence of dementia diseases remains at current levels, the number of people with dementia will be doubled to about 135 000 by 2040.

Dementia Plan 2015 "Den gode dagen" aims to strengthen the quality, competence and capacity of services to people with dementia and their caregivers. One of the priorities is to provide support and counselling for the caregivers. In implementing the Dementia plan there is a need for increased knowledge about interventions that are effective to support caregivers for people with dementia.

Norwegian Knowledge Centre for Health Services was commissioned by the Ministry of Health and Care Services to summarize the available research on interventions to support caregivers of people with dementia living in the community.

Methods
When we did the initial search for literature (February 2010), we identified a relevant guideline: "The NICE guideline on supporting people with dementia and their caregivers in health and social care" (search from 2006). Based on the documentation in the guideline, we did an updated search for systematic reviews and single studies in June 2010 in the following databases: Medline, Embase, Amed, British Nursing Index, PsycINFO, Cochrane Library, CRD Databases, Social Services Abstracts, Social Science / Science Citation Index and SveMed.

The inclusion criteria were:
Study Design: Systematic reviews (SR) of high quality and recent single studies with the following study design: Randomized controlled trials and prospective controlled trials.
Population: Caregivers of people with dementia living in the community (family member, members or other close caregivers such as friends and neighbours)
Intervention: All kinds of interventions to support families of patients with dementia.
Comparison : No intervention or standard intervention
Outcome: Burden, depression, fatigue, quality of life, self-efficacy and social activity.

Two authors independently assessed reviews for inclusion and assessed methodological quality by using inclusion schemes and check lists. The quality of the evidence was assessed using GRADE.

Results
We identified 3397 publications in the search. After reviewing titles, abstracts and articles in full text, and assessed methodological quality, we included three systematic reviews and 36 single studies in the report. We divided interventions into four major categories based on the section in the NICE report and overview of Parker 2008. Psycho-education : Structured presentation of information about dementia and caregiver issues, and includes applying new knowledge to problems. Support may also be part of a psycho-education group but is secondary to the education content. Support and counselling : Practical help and support with the opportunity to discuss problems and feelings. Multi-component : Combination of at least two of the categories above. Psychological interventions : for example cognitive behavioural therapy.

 Multi-component intervention including education and counselling may reduce caregiver burden and depression and increase caregiver subjective well-being. Multi-component interventions by occupational therapist involving caregiver and patient at home seem to have a small effect on caregiver depression, quality of life and self-efficacy and little or no effect on burden. Individual psycho-education may reduce caregiver burden. Psycho-education in groups and individual support and counselling seem to have little or no effect on caregiver burden and individual support seems to have little or no effect on depression. In addition support and befriending from volunteers seems to have little or no effect on quality of life for caregivers.

Discussion
Multi-component interventions including education and counselling may reduce caregiver burden and depression and increase subjective well-being and self-efficacy. Individual psycho-education at home may reduce caregiver burden. Psycho-education in groups seems to have little or no effect on caregiver burden, depression, subjective well-being and self-efficacy.  Individual support and counselling at home or by telephone seem to have little or no effect on caregiver burden and depression. Support and befriending from volunteers seem to have little or no effect on quality of life and subjective-wellbeing for caregivers. Few studies reported long-term effect.

Two of the recent single studies are carried out in Scandinavia, one in Norway and one in Sweden. However most of the studies are conducted in the USA and Asia, where both culture and social structure are different than in Norway. It might be a challenge to transfer the results to Norwegian setting. There is also considerable variation in the populations of the studies included in relation to age, sex and the spouse relationship to the person with dementia. In addition it is variation in relation to the degree of dementia in the included studies.

Interventions to support caregivers for people with dementia have been established in several Norwegian municipalities, interventions such as “schools for caregivers” and support groups.  “Schools for caregivers” include education and support in the form of discussion groups. The intervention seems to be in accordance with what we know from research about effective interventions to support caregivers of people with dementia

Conclusions
Multi-component interventions that consist of both teaching with practical application of knowledge, support and counselling may have a small effect on caregiver burden, depression, quality of life and self-efficacy. Individual psycho-education may have a small effect on the caregiver burden. There is a need for robust studies, relevant to Norwegian settings, such as studies evaluating the effect of “school for caregiver”.

Norwegian Knowledge Centre for the Health Services summarizes and disseminates evidence concerning the effect of treatments, methods, and interventions in health services, in addition to monitoring health service quality. Our goal is to support good decision making in order to provide patients in Norway with the best possible care. The Centre is organized under The Directorate of Health, but is scientifically and professionally independent. The Centre has no authority to develop health policy or responsibility to implement policies.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

This is a publication from the Norwegian Knowledge Centre for the Health Services. The Knowledge Centre became part of the Norwegian Institute of Public Health 01/01/2016.

Updated literature search