Family and friends play a pivotal role in enabling an older person with a life-limiting illness to continue to live at home. Most carers are unprepared for their caring role and in order to provide optimum care to their loved one, they depend on adequate information, education and support to enhance knowledge, build skills and protect their own health and coping abilities. [1,2]
The included systematic reviews relate to interventions and education for people with advanced disease (particularly cancer) or people receiving palliative care and their carers. [1-10] Many reviews do not specifically relate to education of older carers or of carers in the context of community aged care. [1-3,6,7,9,10] Four reviews focussed on dementia. [5,11-13] The proportion of older people in the study population was only sometimes reported. The reviews are of variable quality and include research of variable quality and methodological rigour. One lower-level paper was included for context. 
Many of the reviews note that the diversity of the interventions and the way they were evaluated make it difficult to draw conclusions with confidence and to be able to generalise the findings. [1-3,6,8-10] Many of the studies suffer from small sample size and attrition because of the inevitable trajectory of palliative care and advanced disease. [1-3,6,8-10]
Many papers review studies with a variety of methodologies: randomised-control trials (RCTs), comparative trails or quasi-experimental studies. Only one review pooled data in a meta-analysis.  One Cochrane review investigating training and support for palliative care volunteers in community settings noted the absence of any studies using control comparisons (control groups or control sites).  One paper  reviewed and discussed the merits of different study designs relating to carers or people receiving palliative care. The authors propose two study designs as ways to allow the enhanced recruitment and feasibility without compromising the validity of the results.
Interventions for carers and people in advanced disease, cancer, and palliative care
Chi et al.  reviewed behavioural and educational interventions to support carers looking after people with a terminal illness. Although this study did not set out to investigate care for or by older people, the majority of the research was related to carers aged 55-61 years, many looking after people with advanced dementia. This review focussed on educational interventions, psycho-educational (education plus counselling and support) interventions and cognitive behavioural therapy. All showed a positive effect on the carers’ knowledge, attitudes, and coping skills.
Candy et al.  and Harding et al.  investigated the ways that informal carers can be supported. Harding et al.  updated previous research and noted that there was an increase in quality and quantity of research in this area. These reviews plus that of Chi et al.  included many of the same studies. The systematic review by Candy et al.  is of high-quality and concluded that interventions for the carer helped in the short-term to cope with the caring role. The variability in type and delivery of programs and the small scale of the research, limited the conclusions that could be drawn and the generalisation of the results.
Farquhar et al.  reviewed the key elements of the educational interventions available for carers looking after people with advanced disease (most often cancer). Most were conducted by health professional(s) with the majority of these delivered face-to-face and to individuals (rather than to groups), and most included an element of problem-solving. Half the interventions (24 of 49) were targeted at the person and their carers/family members; the others were targeted specifically at the person or family members only. All used written materials (flipcharts, brochures), some used audio-visual materials (slideshow, pre-recorded video, CD-ROM, DVD, audio tapes. Most programs covered multiple topics and were run as a series and were targeted to the person receiving care and their carers rather than just carers. Some of the studies recorded the reasons why people do not participate or continue with the education sessions and this may be useful in planning education sessions.
Nevis  in a high-quality systematic review concluded that educational interventions for carers and the person they care for significantly improved carer quality of life and the person’s symptom control. This review was the only one to included meta-analysis of the data.
Education – building knowledge
Information may be readily available particularly for those who are computer-literate, but it is often difficult for people to easily access and recognise trustworthy information.  It is often difficult to find information which is appropriate to a person’s needs and disposition.  Information available online should be written in simple language so that it can be understood by the majority of people and at their varying health literacy levels.  Older people may require extra help in accessing online information.
Klimova et al.  investigated e-learning for informal caregivers of older people with dementia (although not specific to palliative care). eLearning was associated with improved confidence, a reduction in perceived stress and increased empathy and understanding. Lucero et al. 2019 examined the value of information and communication technology (ICT) interventions (telephone, computer, and video) for caregivers who support people with dementia.  Strong evidence supported the positive impact of standalone telephone interventions or in conjunction with other ICT interventions on depression, burden and anxiety. However, this study highlighted the limited evidence for diverse population subgroups and was not specific to older people or people with palliative care needs.
Access to education
Carers may wish to participate in education or training sessions but may not be able to due to many reasons associated with the demands of caring such as lack of respite care, living in remote locations, or reluctance to join a group. [6,9,13] Home telehealth, e-learning and ICT may allow more carers to access training and education.  However, these technologies may require user training and may not be a medium of choice for older people. [11,12] Online learning that is carer led, with limited offline support, has been shown to have high attrition rates. 
- The short-term and long-term effects of providing end-of-life care as an older person is not well understood.
- It is unclear as to whether carers feel able and confident to refuse the role of a carer.
- The contribution of death literacy to the community’s capacity to care is, as yet untested.
- What simple tools or short questionnaires are useful in evaluating a carer’s health literacy? Will these easily help the access to appropriate information or education?
- To what extent are online or blended education resources used by older people? Can these be produced to particularly help older carers or older people in palliative care?
- Is there sufficient understanding of the cost and benefits of delivering education to carers / older carers?
- Can telehealth play an important role in supporting older carers or people caring for older people? Telehealth may allow easier access to information and education resources at a low cost but does this suit older carers?
- Partially randomised patient-preference trials’ and ‘fast-track’ RCTs were suggested by Schildmann and Higginson  as alternative study designs (to ‘classic’ RCTs) to maintain validity whilst enhancing recruitment and generalisability of results. Their feasibility and usefulness could be used to evaluate the effectiveness of carer interventions for older people.
- There is a lack of evidence on how to improve QoL in home care provision.
Page updated 31 May 2021