Psychological Challenges Among Older Adults with Early Stage Dementia: A Systematic Review

Background and Purpose: Due to the rapid expected growth in the population of older adults with dementia, exploring the issues and experiences related to early-stage dementia (ESD) is a fundamental step toward helping individuals adjust to their diagnosis and transition into treatment. At present, however, little is known about how people with ESD cope with the onset of dementia because most existing studies focus on caregiving issues and experiences related to dementia such as caregiver burden and social support for caregivers. The purpose of this paper is to review the extant literature regarding how older adults adjust to and cope with the onset of dementia through major situations and difficulties. This paper helps to understand the challenges with the continuous process of adjusting to ESD and to focus on the experience among the older adults with ESD themselves.

Methods: To follow the chronological experiences of older adults with ESD, which were from recognition of dementia to an acceptance of dementia, the literature review attends to the following: diagnosis of dementia, stigma related to ADRD, the development of identity with ESD, and social and service-related experiences of older adults with ESD. A systematic approach was conducted through PsycINFO, PubMed, Social work abstracts, and Social work abstract using combinations of the search terms including the dementia terms such as Alzheimer, the terms related to older adults such as the elder, and the terms related to each challenge, including diagnosis, stigma, identity, and service experiences. 120 articles were found that were published in the U.S. and other western countries between 1995 to 2020.

Results: From the review of literature relevant to the diagnosis of ADRD, two contributing factors are explored: cultural and structural factors followed by individual and social factors. Also, there are two types of studies on stigma around dementia: studies on externalized stigma and studies on internalized stigma. As memory loss in ESD poses a threat to such understandings, studies have identified key factors that influence this development, including self-awareness of one’s own dementia, the need to self-adjusting to dementia, and the influence of ESD on developing an identity with dementia. The literature available regarding experiences of older adults with ESD largely deals with topics of social experiences and the experiences of a certain service or intervention. In all challenges, stigma related to dementia was a powerful risk factor that hindered psychological adjustment to ESD. Varied cultural perspectives on dementia and a lack of knowledge of dementia symptoms among diverse older adults and their families were also major risk factors.

Conclusions and Implication: Compared to other western countries, there was a lack of literature in the U.S., especially around the development of identity with dementia and older adults’ perspectives on available services. Also, there were insufficient U.S. studies that explored the challenges of psychological adjustment among racial and ethnic minority groups. With the life course perspectives, future research on the challenges at the ESD should be addressed toward improving the empowerment of older adults with dementia by collaborating all four themes.