The Effect of Receiving a Diagnosis of Alzheimer’s Disease and Related Dementias on Social Relationships of Older Adults

Abstract

<b><i>Introduction:</i></b> Although early diagnosis has been recognized as a key strategy to improve outcomes of Alzheimer’s disease and related dementias (ADRD), the effect of receiving a diagnosis on patients’ well-being is not well understood. This study addresses this gap by examining if receiving a dementia diagnosis influences social relationships. <b><i>Methods:</i></b> Data from the 3 waves (2012, 2014, and 2016) of the Health and Retirement Study were utilized as part of this study. This study examined whether receiving a new diagnosis of ADRD changed subsequent social relationships (social networks, social engagement, and social support). Regression analyses with inverse probability weighting were performed to estimate the impact of receiving a dementia diagnosis on changes in social relationships. <b><i>Results:</i></b> Receiving a new diagnosis of ADRD reduced both informal and formal social engagement. We found no statistically significant impacts of receiving a diagnosis of ADRD on social networks and social support. <b><i>Conclusions:</i></b> Results suggest that receiving a new diagnosis of ADRD may have unintended impacts on social relationships. Practitioners and policymakers should be aware of these consequences and should identify strategies to alleviate the negative impact of receiving a diagnosis of ADRD and methods to mobilize support networks after receiving a diagnosis.

An outcome‐wide analysis of the effects of diagnostic labeling of Alzheimer's disease and related dementias on social relationships

“…Our findings also indicated that a diagnostic label of ADRD may reduce the social engagement of recipients. This is consistent with relatively rich evidence of social disengagement among people with ADRD 22,23,70–72 . This study strengthened the evidence by utilizing a larger sample and more robust statistical methods.…”

“…We advance the evidence by showing, with a quasi‐experimental study design, that a diagnostic label of ADRD may contribute to increasing informal and formal social support among people with ADRD. Interestingly, this is partially inconsistent with a previous study that revealed that dementia diagnoses did not change perceived social support 22 . Although a direct comparison may not be possible, this inconsistency implies that unmet needs may still remain despite increases in support after a diagnosis 66,67 .…”

“…Although it is well‐investigated that people with ADRD are more likely to receive social and healthcare support, 18–21 it is not clear to what extent a diagnostic label contributes to the increase in support. Receiving a diagnosis of ADRD may discourage people from being socially engaged through both informal and formal means 2,14,22,23 . However, there is a need for studies with larger sample sizes that focus on both formal and informal social activities to better estimate effects.…”

Living with cognitive impairment: The impact of being diagnosed with dementia. A qualitative study.

“…However, when dementia is not acknowledged as a factor behind social changes, more negative consequences, including social isolation, can occur (46). Along similar lines, (47) have suggested that being diagnosed with dementia may have unintended effects for social relationships, such as decreases in social activities.…”

A Web-Based Self-management App for Living Well With Dementia: User-Centered Development Study

“…They also recommend that these should be considered when developing dementia-specific interventions [2]. Many people with dementia have the ability to maintain an active and social life, but some of the negative effects of receiving a diagnosis, depression, or diagnosis stigma can result in social isolation and withdrawal from society [3,4]. It is important that people living with mild dementia are supported and encouraged to maintain their normal activities, remain independent, and stay active within society for as long as they are able to.…”