Families of those living with dementia often do not understand what is happening to their affected relatives. Often they think that this is a normal part of ageing, and so do not seek help.
This lack of knowledge and understanding about dementia leads to difficulties. Carers do not understand why the older person is behaving the way that they do. They do not know what the future holds. Sometimes, other family members do not understand all the difficulties they face and, far from supporting them, criticise them or blame them. This lack of understanding is generally greater in low- and middle-income countries.
The 10/66 Dementia Research Group’s ‘Helping Carers to Care’ train-the-trainer intervention was developed in India with input from the wider 10/66 group of international experts. It targets the main carer of the person with dementia and also includes members of the extended family. The aim is to provide the carer with basic education about dementia and specific training on managing behaviours that are problematic.
The intervention has been tested in randomised controlled trials in Argentina, Chile, China, Dominican Republic, India, Mexico, Peru, Russia and Venezuela. The results indicated positive effects on levels of carer psychological illness and strain – greater effects than are typically seen in trials of such interventions in high-income countries.
How it works
Community health workers are trained in a two-day training programme. They cover information provided in three modules and take part in roleplays of intervention scenarios.
The aim is to enable the health workers to acquire knowledge and skill to work with families in the following areas:
- Generic counselling skills
- By simple assessment to identify dementia cases in the community
- To identify the resources and problems experienced by the patient’s family in caring for the person with dementia
- To educate the family members about dementia, its causes, typical course, and possibilities for treatment
- To educate the family members about general caregiving strategies
- To teach simple strategies to caregivers to better manage specific troublesome symptoms
- To maximize the function of the family as a united caregiving unit
Following the two-day training programme, the community health worker provides training to family carers over five weekly half-hour sessions.