Introduction: 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. Methods: 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. Results: 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. Conclusions: 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.

In the USA, it is estimated that >6 million people had Alzheimer’s disease and related dementias (ADRD) in 2020, and this number is projected to increase to 13.8 million by 2050 [1]. Given the lack of a cure, research has focused on the ways in which people with ADRD can maintain or improve their quality of life after receiving a diagnosis. It is especially important to identify strategies that minimize the impact of a diagnosis on social aspects of the lives of people living with ADRD, considering the heavy stigma embedded in these disorders [2, 3].

Receiving a diagnosis of ADRD may have a profound impact on the person’s life. Studies have demonstrated that receiving an ADRD diagnosis improves psychological and behavioral aspects of people with ADRD and their family members when it results in psychological relief [4‒10] or promotion of healthy behaviors [11]. Some studies, however, have also provided evidence of the negative ramifications of a diagnosis in that it may cause negative consequences such as fear and anxiety [3, 4, 7, 9, 12], posttraumatic stress [13], and suicidal ideation [14, 15]. Given the nuanced impact a diagnosis has on individual psychosocial functioning, healthcare providers need to recognize and weigh the relative dis/advantages of receiving a diagnosis of ADRD.

The impact of receiving a diagnosis of ADRD on individuals’ social lives has not been well investigated. Although previous studies suggest reduced social engagement and increased service utilization among people with dementia, they tend to utilize small samples of people who already had a diagnosis at baseline [6, 16‒18]. A notable exception is a study by Hackett and colleagues [19], which used a large observational dataset and demonstrated that receiving a diagnosis of ADRD caused a reduction in informal social engagement (face-to-face and telephone contacts) 2 years after receiving a diagnosis. However, the impact of receiving a diagnosis of ADRD on other aspects of social relationships such as social network, formal social engagement, and social support has not been investigated.

This study aims to examine if receiving a diagnosis of dementia influences social relationships among older adults. Particular attention is paid to investigating the causal relationships between receiving a new diagnosis of ADRD and subsequent changes in 3 aspects of social relationships: social network, social engagement, and social support.

Data and Sample

Data were drawn from 3 waves of the Health and Retirement Study (HRS; 2012, 2014, and 2016). The HRS is a national representative longitudinal study that biennially surveys >22,000 adults aged 51 and older and their spouses since 1992. In 2012, 20,554 respondents participated in HRS. As shown in Figure 1, 7 exclusion criteria were applied to select the sample for this study. The final sample consisted of 2,294 respondents who did not have a diagnosis in 2012.

Fig. 1.

Flowchart of sample selection.

Fig. 1.

Flowchart of sample selection.

Close modal

Measures

Diagnosis of ADRD

The independent variable of the current study was receiving a new diagnosis of ADRD in 2014. HRS asks 2 separate questions about whether a doctor has ever told the respondent that he/she has “Alzheimer’s disease” or “dementia, senility, or any other serious memory impairment.” The response of “yes” to either question was recorded as receiving a diagnosis of ADRD.

Social Relationships

Dependent variables were social relationships in 2016. Three aspects of social relationships (social networks, social engagement, and social support) were measured. For social networks, 2 variables were included: size of social network and number of close ties. The composition of the social network scale was used to measure social network size [20]. Scores range from 0 to 4, where higher scores represent bigger social network size. The number of close ties was measured using the number of close social relationships scale [20]. Due to the highly skewed distribution of the number of close ties, a quartile score was utilized.

To measure social engagement, 2 variables were utilized: informal social engagement and formal social engagement. Informal social engagement was measured using the index score of frequency of meeting up and speaking on the phone [20]. The score ranges from 1 to 6, where higher scores represent higher informal social engagement. Formal social engagement was measured using 5 social activities: volunteering with children, other volunteering, attending educational courses, attending sports, social, or other clubs, and attending nonreligious organizations, in accordance with Hand and Howrey [21]. The score ranges from 0 to 5, where higher scores represent higher formal social engagement.

Social support was measured using 2 scales: perceived positive support and perceived negative social support [20]. Both scores range from 1 to 4, where higher scores represent higher perceived positive/negative social support.

Covariates

A range of covariates were identified as correlates of the probability of receiving a diagnosis of ADRD, which were based on a thorough review of the literature. All covariates except those unavailable in HRS 2012 were included. Covariates covered 4 categories: sociodemographic factors, cognitive function and comorbidity, health service utilization, and social environment. All covariates and their measures are shown in online supplementary Table 1 (see www.karger.com/doi/10.1159/000519581 for all online suppl. material).

Statistical Analysis

Analyses were conducted in 2 steps. For the first step, a propensity score of receiving a diagnosis of dementia and weighting of the comparison cases was estimated. Generalized boosted regression was utilized to estimate the propensity score. All available covariates were included in the model. The estimated propensity score was utilized to calculate the inverse probability weight (IPW).

For the second step, multiple regression models were fitted to estimate the effects of receiving a diagnosis of dementia on social relationships. For all regression models, IPW was utilized as a sampling weight to alleviate potential selection bias. For count-dependent variables (social network and formal social engagement), Poisson regression analyses were utilized. For the ordinal-dependent variable (close ties), an ordered logistic regression analysis was utilized. For continuous dependent variables (informal social engagement, perceived positive social support, and perceived negative social support), ordinary least square regression analyses were utilized. All models include baseline (2012) social relationships to estimate the change in social relationships between 2012 and 2016. Sensitivity analyses were conducted by including the covariates that are not balanced after applying the IPW between the groups with and without a diagnosis for double adjustment [22].

Sampling weights provided by the HRS were utilized in the generalized boosted model to estimate the propensity score. In the HRS, spouses of the selected respondents were also interviewed. Therefore, some respondents were from the same household, and the data are nested. In order to avoid biased estimation caused by the nested data, a clustered robust standardized error was used for all analyses. Missing data were imputed using multiple imputation with chained equations. Twenty datasets were created, and results were integrated using Rubin’s rule [23]. Analyses were conducted using Stata version 16.

Thirty-three (1.4%) respondents received a diagnosis of ADRD between 2012 and 2014. In propensity score weighted bivariate analyses, covariates that were significantly associated with receiving a diagnosis of dementia included age (F [1.74, 3,211.24] = 3.814, p = 0.028), gender (F [1, 1,844] = 7.39, p = 0.007), marital status (F [1.49, 2,755.97] = 3.406, p = 0.047), cognitive function (F [1.98, 3,655.33] = 4.82, p = 0.008), and self-rated memory (F [1.96, 3,622.48] = 4.03, p = 0.018). Online supplementary Table 2 shows all results of unweighted and weighted bivariate analyses between covariates and receiving a diagnosis of dementia.

Table 1 illustrates the results of propensity score weighted regression analyses on social relationships. Receiving a diagnosis of dementia significantly reduced informal social engagement {b (95% confidence interval [CI]) = −0.476 (−0.842, −0.120), p = 0.011} and formal social engagement (incident risk ratio [95% CI] = 0.688 [0.487, 0.971], p = 0.034). In contrast, receiving a diagnosis of dementia did not have a significant impact on social network size ( incident risk ratio [95% CI] = 0.933 [0.822, 1.058], p = 0.279), close ties (odds ratio [OR] [95% CI] = 1.569 [0.673, 3.658], p = 0.296), perceived positive social support (b [95% CI] = −0.042 [−0.220, 0.136], p = 0.641), and perceived negative social support (b [95% CI] = 0.014 [−0.164, 0.193], p = 0.875). Sensitivity analyses with double adjustment showed similar results (see Table 1 for the details).

Table 1.

Results of regression analyses on social relationships

 Results of regression analyses on social relationships
 Results of regression analyses on social relationships

Although the benefits of an early and timely diagnosis of dementia have been widely recognized, few studies have examined the impact of receiving a diagnosis on social relationships of the recipient. This study is the first to investigate the causal relationship between receiving a diagnosis of ADRD and 3 aspects of social relationships. Our findings suggest that receiving a diagnosis of ADRD may have unintended impacts on social relationships such as reducing social engagements and not changing one’s social network and perception of social support.

Results of this study suggest that receiving a diagnosis of dementia may reduce both informal and formal social engagement. This finding is consistent with the previous studies showing that people with ADRD are less likely to engage in social activities [19]. In the previous studies, however, it was not clear whether low social engagement is due to reduced ability of people with dementia or other factors [19]. This study extends the evidence by showing that receiving a diagnosis of ADRD may negatively impact on not only formal social engagement but also informal social engagement, regardless of the ability of the recipients. This finding suggests the possibility of promoting social engagement among people with dementia. Given that higher social engagement is known to be associated with a range of positive health and psychological outcomes [24‒30], it is essential to identify strategies to promote social engagement among people living with ADRD. It may be especially important to promote informal social engagement which may be more accessible than formal social engagement. To do so, further understanding of the mechanism(s) between receiving a diagnosis of ADRD and social engagement is necessary. Husband [6], in a case study of people with dementia, revealed that knowing the diagnosis of dementia may make people socially withdrawn due to low self-esteem and self-stigmatization. Future studies should address whether the relationship between receiving a diagnosis of dementia and social engagement may be mediated by factors such as self-esteem, self-stigmatization, or other stigma-related factors in order to develop an intervention that alleviates the negative impact of a diagnosis.

Our findings also indicated that receiving a diagnosis of dementia may not influence the social network and social support of the recipient. This may be one of the reasons why the dyads of people with dementia and their family caregivers experience social isolation [31, 32]. Although receiving a diagnosis of dementia may be a major determinant of service utilization [18], people with dementia and their family members may not seek help outside their households because they may not be aware of availability of supports and services [33]. Furthermore, the lack of impact of receiving a diagnosis of dementia on expanding social network size and increasing social support may be especially problematic for disadvantaged populations who have less resource prior to the diagnosis [34]. Further studies are needed to further understand the impacts of the diagnosis on social relationships across subgroups (e.g., race identities, living areas, and household incomes) which will provide support of targeting strategies to ensure sufficient social support after the diagnosis of dementia for different subgroups.

This study certainly has some limitations. First, although we utilized a nationally representative sample, only small proportions of people had a new diagnosis of ADRD. This may limit the generalizability of our results. Further studies are needed to confirm the findings using samples from future waves of HRS with more cases with a new diagnosis of ADRD. Second, we relied on the respondents’ self-report of a diagnosis of ADRD. It is possible that the lack of self-awareness of having one of these disorders may influence the rate of having a diagnosis of ADRD. Moreover, although we combined 2 questions regarding the diagnosis of dementia, having “Alzheimer’s disease” and “dementia, senility, or any other serious memory impairment” may have different impacts on social aspects of the recipient. Future studies are needed to examine the impact of a diagnosis of ADRD using formal documentation of the diagnosis and to test for differences between a self-reported diagnosis and a documented diagnosis. Finally, this study did not consider the process of disclosure of a diagnosis of ADRD. Previous studies suggested that outcomes of receiving a diagnosis of ADRD may vary dependent on how it was disclosed [10, 35]. Although such information is not available in HRS, future studies should examine the relationship between the process of disclosure and social outcomes of receiving a diagnosis of ADRD.

Despite its limitations, findings of this study are valuable and have practical implications. For the first time, we examined the effects of receiving a diagnosis of dementia on various aspects of social relationships using a nationally representative sample of US older adults. Practitioners should be aware that receiving a diagnosis of ADRD may negatively impact the social engagement of the recipient, and it may not immediately expand support networks. Strategies to alleviate the negative impact of receiving a diagnosis of ADRD and methods to mobilize support networks after receiving a diagnosis should be identified.

This study utilized the publicly available secondary data drawn from the HRS in which all participants provided informed consent. The protocol of this study was reviewed and approved by the Rutgers University Newark School of Arts and Sciences Internal Review Board as a nonhuman subject research, Approval No. Pro2020001663.

The authors declare no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

This study was supported by an internal Research Council Grant provided by Rutgers University.

All authors (T.A., A.R., C.S., and Y.J.) contributed to study concept and design. T.A. downloaded publicly available data. T.A., A.R., and Y.J. analyzed and interpreted data. All authors contributed to drafting of the manuscript and intellectual content.

Publicly available datasets were used in this study. These can be found in https://hrs.isr.umich.edu/about.

1.
Alzheimer’s Association
.
2020 Alzheimer’s disease facts and figures
.
Alzheimers Dement
.
2020 Mar
;
16
(
3
):
391
460
.
2.
Benbow
SM
,
Jolley
D
.
Dementia: stigma and its effects
.
Neurodegener Dis Manag
.
2012 Apr
;
2
(
2
):
165
72
.
3.
Swallow
J
.
Expectant futures and an early diagnosis of Alzheimer’s disease: knowing and its consequences
.
Soc Sci Med
.
2017 Jul
;
184
:
57
64
.
4.
Bamford
C
,
Lamont
S
,
Eccles
M
,
Robinson
L
,
May
C
,
Bond
J
.
Disclosing a diagnosis of dementia: a systematic review
.
Int J Geriatr Psychiatry
.
2004 Feb
;
19
(
2
):
151
69
.
5.
Carlson
MC
,
Helms
MJ
,
Steffens
DC
,
Burke
JR
,
Potter
GG
,
Plassman
BL
.
Midlife activity predicts risk of dementia in older male twin pairs
.
Alzheimers Dement
.
2008 Sep
;
4
(
5
):
324
31
.
6.
Husband
HJ
.
The psychological consequences of learning a diagnosis of dementia: three case examples
.
Aging Ment Health
.
1999 May
;
3
(
2
):
179
83
.
7.
Mitchell
G
,
McCollum
P
,
Monaghan
C
.
The personal impact of disclosure of a dementia diagnosis: a thematic review of the literature
.
Br J Neurosci Nurs
.
2013 Oct
;
9
(
5
):
223
8
.
8.
Pinner
G
,
Bouman
WP
.
To tell or not to tell: on disclosing the diagnosis of dementia
.
Int Psychogeriatr
.
2002 Jun
;
14
(
2
):
127
37
.
9.
Portacolone
E
,
Johnson
JK
,
Covinsky
KE
,
Halpern
J
,
Rubinstein
RL
.
The effects and meanings of receiving a diagnosis of mild cognitive impairment or Alzheimer’s disease when one lives alone
.
J Alzheimers Dis
.
2018 Jan
;
61
(
4
):
1517
29
.
10.
Wynn
MJ
,
Carpenter
BD
.
Discourse features among providers, patients, and companions and their effect on outcomes of dementia diagnosis disclosure
.
J Gerontol B Psychol Sci Soc Sci
.
2019 Jun
;
74
(
5
):
756
63
.
11.
Arora
K
,
Bhagianadh
D
.
Smoking and alcohol consumption following a new dementia diagnosis
.
J Gerontol Ser B
.
2021 Mar
;
76
(
4
):
745
55
.
12.
Carpenter
BD
,
Xiong
C
,
Porensky
EK
,
Lee
MM
,
Brown
PJ
,
Coats
M
,
.
Reaction to a dementia diagnosis in individuals with Alzheimer’s disease and mild cognitive impairment: reaction to a dementia diagnosis
.
J Am Geriatr Soc
.
2008 Mar
;
56
(
3
):
405
12
.
13.
Dunham
A
,
Mellor
D
,
Rand
E
,
McCabe
M
,
Lewis
M
.
Impact of disclosure of a dementia diagnosis on uptake of support services: a pilot study exploring a post-traumatic stress approach
.
Dementia
.
2020 Nov
;
19
(
8
):
2658
70
.
14.
Holmstrand
C
,
Rahm Hallberg
I
,
Saks
K
,
Leino-Kilpi
H
,
Renom Guiteras
A
,
Verbeek
H
,
.
Associated factors of suicidal ideation among older persons with dementia living at home in eight European countries
.
Aging Ment Health
.
2020 Mar
;
1–10
:
1
.
15.
Haw
C
,
Harwood
D
,
Hawton
K
.
Dementia and suicidal behavior: a review of the literature
.
Int Psychogeriatr
.
2009 Jun
;
21
(
03
):
440
.
16.
Bunn
F
,
Goodman
C
,
Sworn
K
,
Rait
G
,
Brayne
C
,
Robinson
L
,
.
Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: a systematic review of qualitative studies
.
PLoS Med
.
2012 Oct
;
9
(
10
):
e1001331
.
17.
Brossard
B
,
Carpentier
N
.
To what extent does diagnosis matter? Dementia diagnosis, trouble interpretation and caregiving network dynamics
.
Sociol Health Illn
.
2017 May
;
39
(
4
):
566
80
.
18.
Janssen
N
,
Handels
RL
,
Koehler
S
,
Ramakers
IH
,
Hamel
RE
,
Olde Rikkert
MG
,
.
Combinations of service use types of people with early cognitive disorders
.
J Am Med Dir Assoc
.
2016 Jul
;
17
(
7
):
620
5
.
19.
Hackett
RA
,
Steptoe
A
,
Cadar
D
,
Fancourt
D
.
Social engagement before and after dementia diagnosis in the English Longitudinal Study of Ageing
.
PLoS One
.
2019 Aug
;
14
(
8
):
e0220195
.
20.
Smith
J
,
Ryan
L
,
Fisher
GG
,
Sonnega
A
,
Weir
D
.
Psychosocial and lifestyle questionnaire 2006–2016
.
2017
.
21.
Hand
CL
,
Howrey
BT
.
Associations among neighborhood characteristics, mobility limitation, and social participation in late life
.
J Gerontol B Psychol Sci Soc Sci
.
2019 Feb
;
74
(
3
):
546
55
.
22.
Nguyen
TL
,
Collins
GS
,
Spence
J
,
Daurès
JP
,
Devereaux
PJ
,
Landais
P
,
.
Double-adjustment in propensity score matching analysis: choosing a threshold for considering residual imbalance
.
BMC Med Res Methodol
.
2017 Dec
;
17
(
1
):
78
.
23.
Rubin
DB
.
Multiple imputation for nonresponse in surveys
.
New York, NY
:
John Wiley & Sons
;
1987
.
24.
Bassuk
SS
,
Glass
TA
,
Berkman
LF
.
Social disengagement and incident cognitive decline in community-dwelling elderly persons
.
Ann Intern Med
.
1999 Aug
;
131
(
3
):
165
.
25.
Fratiglioni
L
,
Paillard-Borg
S
,
Winblad
B
.
An active and socially integrated lifestyle in late life might protect against dementia
.
Lancet Neurol
.
2004 Jun
;
3
(
6
):
343
53
.
26.
Livingston
G
,
Huntley
J
,
Sommerlad
A
,
Ames
D
,
Ballard
C
,
Banerjee
S
,
.
Dementia prevention, intervention, and care: 2020 report of the lancet commission
.
Lancet
.
2020 Aug
;
396
(
10248
):
413
46
.
27.
Lum
TY
,
Lightfoot
E
.
The effects of volunteering on the physical and mental health of older people
.
Res Aging
.
2005 Jan
;
27
(
1
):
31
55
.
28.
Morrow-Howell
N
.
Volunteering in later life: research frontiers
.
J Gerontol B Psychol Sci Soc Sci
.
2010 Jul
;
65B
(
4
):
461
9
.
29.
Morrow-Howell
N
,
Wang
Y
,
Amano
T
.
Social participation and volunteering in later life
.
Oxford research encyclopedia of psychology
.
Oxford, England
:
Oxford University Press
;
2019
.
30.
Hajek
A
,
Brettschneider
C
,
Mallon
T
,
Ernst
A
,
Mamone
S
,
Wiese
B
,
.
The impact of social engagement on health-related quality of life and depressive symptoms in old age – evidence from a multicenter prospective cohort study in Germany
.
Health Qual Life Outcomes
.
2017 Dec
;
15
(
1
):
140
.
31.
Brodaty
H
,
Donkin
M
.
Family caregivers of people with dementia
.
Dialogues Clin Neurosci
.
2009
;
11
(
2
):
217
.
32.
Victor
CR
,
Rippon
I
,
Quinn
C
,
Nelis
SM
,
Martyr
A
,
Hart
N
,
.
The prevalence and predictors of loneliness in caregivers of people with dementia: findings from the IDEAL programme
.
Aging Ment Health
.
2021
;
25
(
7
):
1232
8
.
33.
Wolfs
CA
,
de Vugt
ME
,
Verkaaik
M
,
Verkade
PJ
,
Verhey
FR
.
Empowered or overpowered? Service use, needs, wants and demands in elderly patients with cognitive impairments
.
Int J Geriatr Psychiatry
.
2010 May
;
25
(
10
):
1006
12
.
34.
Murchison
CF
,
Kennedy
RE
,
McConathy
JE
,
Roberson
ED
.
Racial differences in Alzheimer’s disease specialist encounters are associated with usage of molecular imaging and dementia medications: an enterprise-wide analysis using i2b2
.
J Alzheimers Dis
.
2021 Jan
;
79
(
2
):
543
57
.
35.
Low
L-F
,
Swaffer
K
,
McGrath
M
,
Brodaty
H
.
Do people with early stage dementia experience prescribed disengagement® ? A systematic review of qualitative studies
.
Int Psychogeriatr
.
2018 Jun
;
30
(
6
):
807
31
.