Carer support interventions

Note: We understand that not all family members are carers, and not all carers are family. We also understand the role of carer may not always be filled by a singular person. We use the term ‘carer’ throughout this page, but please note that this may often be relevant for family members or refer to multiple people.

Many different types of interventions focus on improving the wellbeing of people living with dementia and their carers. These include providing education, training, support, or techniques to reduce carer stress (such as mindfulness or physical activity).

These approaches often aim to improve outcomes such as:

• The impact of supporting someone with dementia (sometimes referred to as ‘carer burden’)
• Carer wellbeing or competence
• Care outcomes for the person living with dementia
• The relationship between the person living with dementia and their carer (sometimes referred to as the dyad).

Most of these interventions are for individuals living in the community (i.e., home care), but some focus on improving the transition to residential care for people living with dementia and their carer or encouraging family involvement once the person living with dementia is in a residential care setting.

Please note psychological interventions for those living with dementia and/or for those providing care are summarised in a separate evidence theme.

This evidence theme on carer support interventions is a summary of one of the key topics identified by a scoping review of dementia research. If you need more information on this topic, try using the PubMed search below.

We found 21 systematic reviews about supportive interventions for people living with dementia and/or their carers. For people living with dementia, supportive interventions were associated with improvements in neuropsychiatric symptoms. [1] The evidence of the effectiveness of supportive interventions is inconclusive for certain outcomes for people living with dementia, such as:

• Responsive behaviours (sometimes referred to as expressions of unmet need) [2-4]
• Quality of life [1]
• Mood [4]
• Daily activities [1, 4]
• Admission to residential aged care [1, 3-6]
• Falls. [7]

For the carer, supportive interventions were associated with:

• Quality of life [4, 6, 8]
• Self-efficacy [3, 9]
• Knowledge [9, 10]
• Skills [10]
• Attitude [10, 11]
• Competence [10, 11]
• Anxiety [9]
• Depression [9]
• Satisfaction [9]
• Perceived availability of formal and informal support. [11]

The evidence of the effectiveness of supportive interventions for carers is inconclusive for certain outcomes, such as:

• Impact of supporting someone living with dementia (sometimes referred to as ‘carer burden’) [1, 2, 4-6, 8, 9, 12-15]
• Psychological wellbeing [5, 16]
• Carer knowledge and skills [5, 9]
• Carer coping and stress. [9, 17]

In other words, studies have assessed the relationship between supportive interventions and these outcomes, but no benefit was reported.

More research is needed to determine how certain interventions may benefit people living with dementia and their carers. However, interventions were more likely to be effective when:

• They had multiple components (e.g., skills training, professional support, and online support [16, 18])
• They were tailored to suit the individual. [3, 18]

The reviews highlighted concerns about the methods used in some of the studies. This reduces the degree of certainty we might have about the benefits of supportive interventions. For example:

• Some studies only had a small number of participants. [2, 3, 6, 11, 12, 15, 17, 18]
• Impact of supporting someone living with dementia (sometimes called ‘carer burden’) was defined and measured in many different ways, making comparison of effectiveness on this particular outcome difficult. [18]
• Potentially important outcomes have not been assessed yet such as the additional pressure that participating in a program may have on a carer [5], the impact on secondary carers [16], and cost. [6, 19]
• It is unclear how long benefits last. [3, 6, 11, 16]

• Assisting a person with dementia and their family carer to understand their diagnosis through a referral to Dementia Australia, participation in a course about dementia or talking with their GP or counsellor can assist the person to overcome the stigma often associated with dementia.
• Encourage individuals to seek information early on - supports that are available for the carer and programs to keep people with dementia connected to their hobbies and interests help maintain quality of life.
• Include the person with dementia and their carer in discussions about care, support, and planning ahead.

• Provide dementia-specific carer support programs to share concerns and connect with other people in their situation
• Provide respite services based on interests and needs that are meaningful to the person with dementia and that allow the carer time to rest or to gain support and information.
•  Offer transition support from home to residential care to assist the carer to remain in their role of partner or relative.
•  Provide information as changes are noticed and more care is needed.

1. Corbett A, Stevens J, Aarsland D, Day S, Moniz-Cook E, Woods R, et al. Systematic review of services providing information and/or advice to people with dementia and/or their caregivers. Int J Geriatr Psychiatry. 2012;27(6):628-36.
2. Hui Z, Yang C, Lee DTF. Interventions for family members after long-term care placement of a relative with dementia: A systematic review and meta-analysis. Res Gerontol Nurs. 2021;14(1):43-52.
3. Vandepitte S, Van Den Noortgate N, Putman K, Verhaeghe S, Faes K, Annemans L. Effectiveness of supporting informal caregivers of people with dementia: A systematic review of randomized and non-randomized controlled trials. J. Alzheimer's Dis. 2016;52(3):929-65.
4. Van't Leven N, Prick A-EJC, Groenewoud JG, Roelofs PDDM, de Lange J, Pot AM. Dyadic interventions for community-dwelling people with dementia and their family caregivers: A systematic review. Int Psychogeriatr. 2013;25(10):1581-603.
5. Gonzalez-Fraile E, Ballesteros J, Rueda JR, Santos-Zorrozua B, Sola I, McCleery J. Remotely delivered information, training and support for informal caregivers of people with dementia. Cochrane Database Syst Rev. 2021;1:CD006440.
6. Jensen M, Agbata IN, Canavan M, McCarthy G. Effectiveness of educational interventions for informal caregivers of individuals with dementia residing in the community: Systematic review and meta-analysis of randomised controlled trials. Int J Geriatr Psychiatry. 2015;30(2):130-43.
7. Meyer C, Hill S, Dow B, Synnot A, Hill K. Translating falls prevention knowledge to community-dwelling older PLWD: A mixed-method systematic review. Gerontologist. 2015;55(4):560-74.
8. Frias CE, Garcia-Pascual M, Montoro M, Ribas N, Risco E, Zabalegui A. Effectiveness of a psychoeducational intervention for caregivers of people with dementia with regard to burden, anxiety and depression: A systematic review. J Adv Nurs. 2020;76(3):787-802.
9. Pleasant M, Molinari V, Dobbs D, Meng H, Hyer K. Effectiveness of online dementia caregivers training programs: A systematic review. Geriatr Nurs. 2020;41(6):921-35.
10. Eggenberger E, Heimerl K, Bennett MI. Communication skills training in dementia care: A systematic review of effectiveness, training content, and didactic methods in different care settings. Int Psychogeriatr. 2013;25(3):345-58.
11. Cabrera E, Sutcliffe C, Verbeek H, Saks K, Soto-Martin M, Meyer G, et al. Non-pharmacological interventions as a best practice strategy in people with dementia living in nursing homes. A systematic review. Eur Geriatr Med. 2015;6(2):134-50.
12. Liu Z, Sun YY, Zhong BL. Mindfulness-based stress reduction for family carers of people with dementia. Cochrane Database Syst Rev. 2018;8:CD012791.
13. Brooks D, Fielding E, Beattie E, Edwards H, Hines S. Effectiveness of psychosocial interventions on the psychological health and emotional well-being of family carers of people with dementia following residential care placement: a systematic review. JBI Database System Rev Implement Rep. 2018;16(5):1240-68.
14. Orgeta V, Miranda-Castillo C. Does physical activity reduce burden in carers of people with dementia? A literature review. Int J Geriatr Psychiatry. 2014;29(8):771-83.
15. Muller C, Lautenschlager S, Meyer G, Stephan A. Interventions to support people with dementia and their caregivers during the transition from home care to nursing home care: A systematic review. Int J Nurs Stud. 2017;71:139-52.
16. Etxeberria I, Salaberria K, Gorostiaga A. Online support for family caregivers of people with dementia: A systematic review and meta-analysis of RCTs and quasi-experimental studies. Aging Ment Health. 2021;25(7):1165-80.
17. Zhao Y, Feng H, Hu M, Hu H, Li H, Ning H, et al. Web-based interventions to improve mental health in home caregivers of people with dementia: Meta-analysis. J Med Internet Res. 2019;21(5):e13415.
18. Thinnes A, Padilla R. Effect of educational and supportive strategies on the ability of caregivers of people with dementia to maintain participation in that role. Am J Occup Ther. 2011;65(5):541-9.
19. Jones C, Edwards RT, Hounsome B. A systematic review of the cost-effectiveness of interventions for supporting informal caregivers of people with dementia residing in the community. Int Psychogeriatr. 2012;24(1):6-18.