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Caregiver Burden & Caregiver-Directed Interventions

By Laura Valzolgher, MD; Medical Doctor, Memory Clinic, Geriatric Department, Hospital of Bolzano, Italy

While the number of people affected by dementia is increasing worldwide and estimated to reach 152 million by 2050, the majority of people affected (50-80% in different European countries) live at home. Family members are vulnerable to great burden; depressive and psychosomatic symptoms, as well as physical, emotional, and economic pressures. Support for dementia caregivers is one of the goals of the global action plan on the public health response to dementia 2017-2025, endorsed by the WHO. Families and caregivers require support from the health, social, financial and legal systems. Therefore, governmental organizations are increasingly interested in which types of interventions most effectively support families and reduce burden -including economic costs- in order to provide efficient national and international policies.

There are different caregiver-directed interventions to support the “well-being” of dementia carers living in the community, which have been investigated in the last 15 years in several RCTs and observational studies. Outcomes of interest are, in general: caregiver psychological health, including caregiver burden, depression, and quality of life, well-being, strain, mastery (taking control of one’s situation), reactivity to behaviour problems, rate of institutionalization, and cost-effectiveness. Attempted meta-analyses have largely failed due to lack of conclusive results, and systematic reviews are also often inconclusive due to lack of high-quality studies and the variety of methodological approaches used in the different studies.

In the current literature, the main categories of caregiver directed strategies considered are:

  • Respite care and day care centers
  • Psycho-social interventions: Psycho-education, Support and counseling, Multi-component and Psychological interventions
  • Other non-conventional, promising interventions: case management, mindfulness training, online based interventions

Respite care and day care centers
Respite care is defined as a relief for the caregiver. In most cases, respite is provided in the home, through day programs, or at institutions (usually 30 days or less). Respite services can vary in delivery and duration, and are carried out by a variety of individuals, including paid staff, volunteers, family, or friends.

Summary of the evidence: Although some studies may suggest that respite and day care might help reduce incidence of behaviour problems, burden for carers, and use of psychoactive amongst persons with dementia, interpretations are limited by the lack of high-quality research. It is also unclear if the use of day care centers for people with dementia reduces or postpones admission to nursing homes or hospitals.

Psycho-social interventions
There are four types of interventions:

  1. Psycho-education: structured presentation of information about dementia and caregiver issues, and application of this new knowledge to problems. Support may also be part of a psycho-education group but is secondary to the education content.
  2. Support and counselling: practical help and support with the opportunity to discuss problems and feelings.
  3. Multi-component interventions: a combination of at least two of the categories above.
  4. Psychological interventions: treatments such as cognitive behavioural therapy.

Summary of the evidence: Psycho-social interventions include a variety of interventions (information, social, educational and psychological support, counseling). Although the evidence is not conclusive among all types of psychosocial interventions, multi-component interventions, such as psycho-education and support for caregivers, may most effectively reduce caregiver burden and depression, and increase subjective well-being.

Other interventions
Case management is a widely used and strongly promoted complex intervention for organising and coordinating care at the level of the individual, with the aim of providing longterm care for people with dementia in the community as an alternative to early admission to a care home or hospital. There is some evidence that case management is beneficial at improving some outcomes at certain time points, but there is not enough evidence to clearly assess whether it could reduce burden and delay institutionalisation in care homes.

Mindfulness interventions: Only a few studies have been investigated lately around the use of Mindfulness interventions in caregiver’s well-being. They show some effects of improvement in depression, perceived stress, and mental health-related quality of life. No significant advantage has been shown in the alleviation of caregiver burden or anxiety. Future large-scale and rigorously designed trials are needed to confirm these promising findings.

Online based interventions are a very promising nonconventional intervention. The WHO, for example, is developing iSupport, an e-health solution that provides information and skills training for carers of people living with dementia. Although there is some evidence that Internet-based interventions can improve mental health outcomes for informal caregivers of people with dementia, marked methodological variations across studies prevent the achievement of robust results. A concerted approach is required to help realise the full potential of this emerging field.

The real efficacy of caregiver-directed interventions on the caregiver’s “well-being” (caregiver burden, depressive symptoms), social and health cost, and delay of institutionalisation is difficult to establish. The differences in population age, sex and the relationship to the person with dementia, the degree of dementia across available studies, the variety of different methodological approaches and the lack of high-quality studies make it difficult to draw a comparison and achieve conclusive results. Beside conventional strategies, there are promising interventions which have still to be further investigated.

For further reading:

  • WHO. Dementia fact sheet updated December 2017.
  • Ontario Health Technology Advisory Committee. Caregiver- and Patient-Directed Interventions for Dementia. An Evidence-Based Analysis-Ontario Health Technology Assessment Series 2008; (9): 1-51.
  • Swedish Council on Health Technology Assessment. Dementia - Caring, Ethics, Ethnical and Economical Aspects: A Systematic Review. Stockholm: Swedish Council on Health Technology Assessment (SBU); 2008 Jun. Available from
  • Reinar LM, Fure B, Kirkehei I, Dahm KT, Landmark B. Effect of day care centers for people with dementia. Oslo: Norwegian Knowledge Centre for the Health Services. 2011; (21).
  • Dahm KT, Landmark B, Kirkehei I, Brurberg KG, Fønhus MS, Reinar LM. Interventions to support caregivers of people with dementia living in the community. Oslo: Norwegian Knowledge Centre for the Health Services. 2011; (6).
  • Liu Z, Chen QL, Sun YY. Mindfulness training for psychological stress in family caregivers of persons with dementia: a systematic review and meta-analysis of randomized controlled trials. Clin Interventions in Aging. 2017;(12):1521-1529.
  • Reilly S, Miranda-Castillo C, Malouf R, Hoe J, Toot S, Challis D, Orrell M. Case management approaches to home support for people with dementia. Cochrane Database Systematic Review. 2015; (5): 1-4.
  • Egan KJ, Pinto-Bruno ÁC, Bighelli I, Berg-Weger M, van Straten A, Albanese E, Pot AM. Online Training and Support Programs Designed to Improve Mental Health and Reduce Burden Among Caregivers of People With Dementia: A Systematic Review. Journal of American Medical Director Association. 2018; (1): in Press.

Laura Valzolgher, MD, works at the Memory Clinic at the Geriatric Department of Bolzano Hospital, Italy. She is currently completing a Master of Science Degree in Psychogeriatrics at University La Sapienza Rome.

Excerpted article as reprint from IPA's newsletter, the IPA Bulletin, Vol. 35, No.1: IPA Members can read full issues here.


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