What is the relationship between people with dementia and their caregiver’s illness perceptions post-diagnosis and the impact on help-seeking behaviour? A systematic review

Abstract

Background: As the number of people with dementia increases, more families will be affected by the daily challenges of providing effective support, given its current incurable status. Once individuals are diagnosed with dementia, the earlier they access support, the more effective the outcome. However, once people receive a diagnosis, how they make sense of their dementia can impact on their help-seeking intentions. Exploring the illness beliefs of people with dementia and their caregivers and this relationship to help seeking may identify how best to facilitate early support. Aims: To systematically obtain and critically review relevant studies on the relationship between illness perceptions and help seeking of people with dementia and their caregivers. Method: A systematic search was conducted and included both quantitative and qualitative studies. The initial search was conducted in October 2018, with an adjacent search conducted in April 2020. Findings: A total of 14 articles met the inclusion criteria. Conceptually, the studies examined the association of illness perceptions and help-seeking post-diagnosis and revealed that people living with dementia and their caregivers sought help when symptoms became severe. Components of illness perceptions revealed that lack of knowledge, cultural beliefs, complexity of the healthcare system, threat to independence and acceptance were identified as major factors for delaying help seeking. Conclusion: Although research interest in the area of illness perceptions and their impact on help seeking for dementia is increasing, further work is needed to understand this area, particularly regarding the influence of the relationship between the person with dementia and their caregiver.