Alzheimer Disease (AD) is a major public health issue with consequences for patients as well as for their caregivers and a high financial strain upon society. Attending a person with AD requires an ever-increasing amount of care. This is generally provided by the children or the spouse, who are indispensable to the AD patients’ well-being as they are best placed to identify their unique needs. As AD develops, patients require progressive and permanent mobilization. Researchers have therefore developed psychoeducational and cognitive support strategies to alleviate caregivers’ distress. These strategies help addressing problem solving issues, ‘burden’ and depressive symptoms with moderate effect-size, but often leave behind the positive aspects of the caregiver-patient relationship and a more generalised change of attitudes and behaviours in the context of caregiving. Moreover, considering the constraints to which caregivers can be subjected, existing supports cannot always fit with their objective availability and subjective readiness.
In this perspective, Opulse aims to first test the feasibility and then the comparative effectiveness of three web-based psychological interventions for caregivers of patients with AD. Opulse proposes (1) an innovative caregiving supports centred on well-being and acceptance combined with (2) a web-based and self-training approach.
The proposed program will comprise three different interventions strategies, which have already shown their potential in the framework of individualized support programmes and which still need to be tested in a web-based strategy: (1) mindfulness practice, (2) positive psychology and (3) acceptance and commitment approaches are evaluated as effective in conditions including mental health and chronic diseases. In Opulse, mindfulness practices focus on formal meditation to limit painful ruminations. Positive psychology allows caregivers access to well-being opportunities directing their attention towards pleasurable experiences. Acceptance and commitment activities aim to improve psychological flexibility and promote new adaptive ways of living as a caregiver.
The proposed web-based and self-training planned interventions are easy to understand, and of short daily duration. Concrete implementation is at participants’ discretion, enabling them to adjust to their caregiving, family, and/or professional priorities. This is important as caregivers are often forced to drop out of support groups due to unpredictable circumstances or to exhaustion. The proposed web-based strategy is meant to be complementary to existing ones. Moreover, given both social and territorial inequalities in access to supports and a growing number of caregivers, Opulse aims to address these shortcomings allowing to "enter the patient’s home" and provide daily life and relation-based support.
Opulse involved two main phases:
- Phase I explored the conditions of acceptability of this strategy with qualitative methods: thematic analysis of 30 interviews with caregivers on their motivations and expectations of such programmes, and focus groups with 20 professionals on their opinion on the acceptability among caregivers and their own attitude were conducted.
- Phase II is devoted to the evaluation of the proposed intervention strategies. About 350 caregivers of patients with AD will be randomly assigned to three 8-week groups and to a control one in which the usual information on the disease is provided to caregivers. The effects for each approach will be tested immediately after intervention and will be compared to pre-test. Effect persistence will be assessed with a follow-up at three months.
Our project should ultimately lead to a website for caregiver support and self-training based on the best activities identified among the three approaches. In its final form, the website will allow to customizing the optimal activity combination and usage patterns, and flexibly adapt commitment to the changing needs of each participant.