Health Status of Lewy Body Dementia Caregivers Predicts Psychological Response to Peer Mentoring Intervention

Abstract

Individuals with Lewy body dementia (LBD) rely on family caregivers. Caregiving demands limit caregivers’ ability to attend to their own health needs, increasing their vulnerability to the psychological effects of caregiving. We previously piloted a peer mentoring intervention with experienced (mentor) and less experienced (mentee) LBD caregivers. Matched mentor-mentee dyads spoke weekly for 16 weeks, guided by an intervention handbook. LBD knowledge and attitudes towards dementia improved post-intervention. We hypothesized that caregiver health status moderates response to peer mentoring. Post hoc analyses (N = 30 dyads) showed that 75% of mentees and 66% of mentors endorsed ≥1 comorbidity. Mentees and mentors with comorbidities showed greater improvement in LBD knowledge postintervention (P = 0.039) and dementia attitudes post-training (P = 0.016), respectively. Caregivers with comorbidities and thus greater exposure to health care may derive excess benefit from an effective LBD caregiver intervention than healthier counterparts, enhancing both the objective knowledge and their confidence in caring for their loved ones.

Caregiving demands often limit caregivers’ ability to prioritize their own health, focusing instead on their care recipient’s needs.¹ Caregiving stress increases the risk of developing health problems and exacerbates existing comorbidities.¹ Conversely, caregivers in fair-to-poor health or with serious health conditions are more likely to report difficulty providing care and declining health since becoming a caregiver.²

Lewy body dementia (LBD) is the second most common neurodegenerative dementia after Alzheimer disease (AD), affecting ~1.4 million Americans, many of whom rely on family caregivers.³ LBD presents unique challenges due to cognitive decline, with marked, unpredictable fluctuations in alertness, alongside mobility impairments from parkinsonism, sleep dysfunction, dysautonomia, and several non-motor symptoms, presenting a different set of challenges than AD. Dementia caregivers are at greater risk for mental and physical health issues than other caregivers,^4,5 and are more likely to report worsening health due to caregiving and perceive health maintenance as difficult.⁵ However, specific health risks for LBD caregivers remain less understood. Only one study to date has examined self-reported comorbidities in LBD family caregivers compared with caregivers of individuals with AD and associated disorders through a national survey.⁶ Among LBD caregivers, hypertension, depression, back pain, arthritis, and heart disease were the most commonly reported conditions.⁶ Given the high prevalence of comorbidities among LBD caregivers, an important area of focus would be to examine how their health status affects their response to caregiver support interventions, potentially guiding modifications that improve both caregiver health and patient outcomes.

In caregiver peer mentoring, experienced caregiver mentors connect with less experienced mentees and offer knowledge, lived experience, and support. Peer mentoring is a feasible and efficacious intervention with LBD caregivers, associated with improvements in LBD knowledge, attitude towards dementia, and depression.⁷ We aimed to apply post hoc analyses to the LBD caregiver peer mentoring data to explore whether caregiver health status moderates changes in participant outcomes over 16 weeks.

METHODS

Participant recruitment, intervention methods, analyses, and primary outcomes have been previously published.⁷ Participants completed a questionnaire assessing demographics (ie, age, sex, race, ethnicity, marital status, and care relationship) and relevant caregiver and care recipient characteristics (eg, duration of LBD and duration of caregiving). We used the validated Self-Administered Comorbidity Questionnaire to assess comorbidities: caregivers indicated whether they were diagnosed with, treated for, or significantly limited by any of 15 common medical conditions.⁸ Among survey participants, eligible individuals interested in mentor or mentee roles were enrolled in the LBD caregiver peer mentoring pilot study, “Learning to PERSEVERE” (PEer mentoR Support and carEgiVER Education), approved by the local Institutional Review Board. Mentors underwent virtual training, covering an overview of LBD, their role as mentors, the intervention handbook, and emergency protocols. Peer mentoring entailed weekly calls between matched mentors and mentees for 16 weeks, guided by the handbook. Primary outcome measures in the pilot assessed LBD knowledge, attitudes towards dementia, and mastery, that is, the extent of caregivers’ perceived control over their lives.⁷ Mentors completed measures pre-mentor and post-mentor training and following 16 weeks of peer mentoring. Mentees completed measures at baseline and postintervention at 16 weeks.

Descriptive statistics were used to summarize participant demographics and Pearson correlations for associations between comorbidities and age, LBD duration, and caregiving duration. We examined associations between comorbidities and number and duration of mentoring calls using t tests. We assessed within-subject change from pre-training to post-training in mentors and pre-mentoring to post-mentoring outcomes in mentees and mentors. Analyses of covariance accounted for moderating effects of the presence of comorbidities and multiple regressions accounted for variability in the number of comorbidities, controlling for age and age.

RESULTS

Caregiver mentees (N = 32) and mentors (N = 38) were primarily female (95% and 94%, respectively), white (92%, 91%), and spousal caregivers (71%, 78%), with a mean age of 66.4 years (SD: 8.9) and 65 years (SD: 10.4), respectively. Among mentees, 24 (75%) reported ≥1 health condition (M = 1.0 condition; SD = 0.9), including hypertension (44%), osteoarthritis/degenerative arthritis (22%), depression (12.5%), and constipation (6%). Among mentors, 25 (66%) reported ≥1 health condition (M = 1.1 conditions; SD: 1.2), primarily hypertension (32%), osteoarthritis/degenerative arthritis (18%), depression (13%), and back pain (13%). Among mentees and mentors, “other medical problems” included thyroid conditions, glaucoma, cataracts, asthma, and fibromyalgia. Table 1 details demographics and comorbidities endorsed by caregivers in our study compared with a national LBD caregiver survey.⁶ Age and caregiving duration correlated positively with the number of comorbidities in mentors (R = 0.475; P = 0.003; R = 0.332; P = 0.042, respectively) but not in mentees (R = 0.326; P = 0.069; R = −0.057; P = 0.756, respectively). No significant correlations were found between caregiver comorbidities and LBD disease duration.

TABLE 1.

Demographics and Comorbidities Endorsed in PERSEVERE LBD Caregivers Compared With a National Survey

	PERSEVERE mentees (N = 32); %	PERSEVERE mentors (N = 38); %	National survey (N = 217); %
Age (y), M (SD)	66.4 (8.9)	65.0 (10.4)	—
18-44	6.3	2.6	5.6
45-54	3.1	5.3	6.6
55-64	28.1	31.6	25.8
65-74	56.3	42.1	35.4
75-84	6.3	18.4	24.2
85+	0	0	2.5
Sex (F)	95	94	84.3
Duration of caregiving, >2 y	59.4	97.4	66.8
High blood pressure	43.8	31.6	38.2
Depression	12.5	13.2	35.0
Back pain	3.1	13.2	34.1
Other medical problems	6.3	15.8	29.0
Osteoarthritis/degenerative arthritis	21.9	18.4	27.7
Heart disease	3.1	2.6	11.5
Constipation	6.3	2.6	11.1
Diabetes	0	7.9	7.8
Ulcer or stomach disease	3.1	2.6	6.9
Rheumatoid arthritis	0	0	6.0
Lung disease	0	7.9	4.6
Kidney disease	0	0	4.6
Cancer	3.1	0	4.2
Anemia or other blood diseases	0	2.6	3.2
Liver disease	0	0	2.8
Psychosis	0	0	1.8
No medical issues	25	34.2	—

LBD indicates Lewy body dementia; PERSEVERE, PEer mentoR Support and carEgiVER Education.

Of 38 eligible mentors, 35 completed mentor training. Thirty matched mentor-mentee dyads completed 16 weeks of peer mentoring. Mentors with comorbidities completed slightly fewer peer mentoring calls with their mentees than healthy mentors (14.4 vs 14.6 calls; P = 0.013). No significant differences were observed in the number of calls reported by mentees or in call duration reported by mentors or mentees based on comorbidities.

Overall, we observed significant improvement in LBD knowledge (P = 0.02) and dementia attitudes (P = 0.001) in mentees between baseline and post-mentoring. Mentors also significantly improved their LBD knowledge (P < 0.01) and dementia attitudes (P < 0.01) from pre-training to post-training; improvement in LBD knowledge (P = 0.01) persisted 16 weeks later postintervention. No significant changes were observed in mentee or mentor mastery. Analyses of covariance showed that the presence of comorbidities significantly moderated mentees’ LBD knowledge change (F = 4.75; P = 0.039), such that mentees with comorbidities experienced greater improvement, that is, mean difference, in LBD knowledge than healthy caregivers (10.83 vs 0). Regression analyses indicated that health status moderated change in mentors’ attitudes towards dementia from pre-training to post-training, such that a higher number of comorbidities was associated with greater improvement (β = 0.187; SE = 3.960; P = 0.016).

DISCUSSION

In the present pilot study, we examined LBD caregiver response to a 16-week peer mentoring intervention and found that caregivers with comorbidities—compared with those without—showed greater improvement in LBD knowledge and dementia attitudes.

Rates of comorbidities found in our participants were similar to the national prevalence rates among LBD caregivers. Compared with prevalence rates from the national survey of 217 LBD caregivers’ comorbidities,⁶ our sample was similar in the most commonly reported comorbidities, that is, hypertension, arthritis, and depression. Back pain was less prevalent in participants (3.1% mentees, 13.2% mentors) than in the national sample (34.1%). In the national study, 29% endorsed “other medical problems”—while this was lower in our pilot (6.3% mentees, 15.8% mentors). As expected, caregiver age and caregiving duration correlated positively with the number of comorbidities. Our findings align with a Centers for Disease Control caregiver survey,⁹ which found that more than half of caregivers aged 65 years and older endorsed 2 or more chronic diseases, compared with 35% of caregivers aged 45 to 64 years. Future studies may explore how variability in type, severity, and cooccurrence of comorbidities influence caregiver vulnerability and resilience.

Our findings suggest that despite vulnerability from comorbidities, these caregivers benefited more from peer mentoring than did healthy caregivers as reflected by their relative improvement in outcomes. Comorbidities appeared to have a protective effect, enabling caregivers to mobilize existing adaptive coping skills learned from managing their comorbidities and have a greater reserve to show improvement in study outcomes. Pohl et al¹⁰ found that poorer self-reported health is associated with social isolation and poor community participation, indicating that caregivers with comorbidities may have been more socially isolated at baseline, and peer mentoring offered a much-needed connection. Given the positive response to our intervention, further study is needed to understand if these findings generalize to other supportive interventions for LBD caregivers.

LBD caregivers with comorbidities achieved better outcomes in our study than healthy caregivers, possibly due to stronger connections to health care and community resources, enhancing health literacy. Higher health literacy helps caregivers engage with health care providers and navigate health services and supports to their loved one’s benefit.¹¹ Despite higher than average rates of comorbidities among caregivers, their medical service utilization is similar or lower than the general population.¹² To reconcile these differences, future studies that explore caregiver intervention response and health status may include health care utilization rates—of both caregiver and patient.

This study’s limitations include its nonrandomized design and small, homogenous sample. Comorbidities were limited to the 15 most prevalent conditions from the national survey,⁶ with those not listed classified as “other.” Future studies may better capture differences in specific comorbidities by surveying with a more comprehensive list. The analyses were post hoc and exploratory, lacking power for multiple comparisons. In subsequent large-scale trials of peer mentoring, such comparisons will be a priori in planned analyses to better understand the impact of caregiver health on intervention efficacy.

CONCLUSION

As LBD and other neurodegenerative dementias increasingly burden caregivers who often neglect their own health, needs, and social networks, interventions like peer mentoring can enhance caregiver support and well-being while mitigating isolation. This study begins to address how LBD caregiver health impacts their intervention response, showing that caregivers with comorbidities show better outcomes across peer mentoring than healthy caregivers. These findings suggest that caregiver comorbidities may be reimagined as both a liability and an opportunity to identify individuals engaged with the health care system whose experiences may be leveraged for the benefit of themselves and their loved ones.