Background Caregivers of patients with Alzheimer’s disease or a related dementia (ADRD) report high levels of distress, including symptoms of anxiety and depression, caregiving burden, and existential suffering; however, those with support and healthy coping strategies have less stress and burden. Acceptance and Commitment Therapy (ACT) aims to foster greater acceptance of internal events while promoting actions aligned with personal values to increase psychological flexibility in the face of challenges. The objective of this single-arm pilot, Telephone Acceptance and Commitment Therapy Intervention for Caregivers (TACTICs), was to evaluate the feasibility, acceptability, and preliminary effects of an ACT intervention on ADRD caregiver anxiety, depressive symptoms, burden, caregiver suffering, and psychological flexibility. Methods ADRD caregivers ≥21 years of age with a Generalized Anxiety Disorder Scale (GAD-7) score ≥ 10 indicative of moderate or higher symptoms of anxiety were enrolled (N = 15). Participants received a telephone-based ACT intervention delivered by a non-licensed, bachelor’s-prepared trained interventionist over 6 weekly 1-h sessions that included engaging experiential exercises and metaphors designed to increase psychological flexibility. The following outcome measures were administered at baseline (T1), immediately post-intervention (T2), 3 months post-intervention (T3), and 6 months post-intervention (T4): anxiety symptoms (GAD-7; primary outcome); secondary outcomes of depressive symptoms (Patient Health Questionnaire–9), burden (Zarit Burden Interview), suffering (The Experience of Suffering measure), psychological flexibility/experiential avoidance (Acceptance and Action Questionnaire-II), and coping skills (Brief COPE). Results All 15 participants completed the study and 93.3% rated their overall satisfaction with their TACTICs experience as “completely satisfied.” At T2, caregivers showed large reduction in anxiety symptoms (SRM 1.42, 95% CI [0.87, 1.97], p < 0.001) that were maintained at T3 and T4. At T4, psychological suffering (SRM 0.99, 95% CI [0.41, 1.56], p = 0.0027) and caregiver burden (SRM 0.79, 95% CI [0.21, 1.37], p = 0.0113) also decreased. Conclusions Despite a small sample size, the 6-session manualized TACTICs program was effective in reducing anxiety, suggesting that non-clinically trained staff may be able to provide an effective therapeutic intervention by phone to maximize intervention scalability and reach. Trial registration Institutional Review Board (IRB) protocol #1904631305 version 05-14-2019. Recruitment began 06-14-2019 and was concluded on 12-09-2019. Recruitment began 06-14-2019 and was concluded on 12-09-2019.

Burden is a significant negative outcome for caregivers of individuals with dementia. Guided by the Stress Process Model, the following study examined the impact of several novel constructs on burden including: compassion for others, family functioning, coping styles, and positive and negative affect. Data were gathered through Amazon Mechanical Turk from 102 dementia caregivers. Participants were 62% female, 72% Caucasian with a mean age of 39.5 years old. Burden was significantly related to positive affect (r =-.31, p =.01), negative affect (r =.56, p =&lt;.01), family functioning (r =.43, p &lt;.01), and dysfunctional coping (r =.37, p &lt;.01). Compassion for others was not correlated with burden. Multiple regression analysis results found the set of predictors accounted for 65.0% of the total variance in burden (F(5,96) = 14.17, p &lt; .01, R2= .65), with positive affect (β = -.26, p = .01), negative affect (β = .19, p= .05), and dysfunctional coping (β = .31, p= .01) predicting significant and unique variance. Results from mediation analyses indicated dysfunctional coping mediated the relationship between positive affect and burden (effect= -.14 95% bootstrap CI= -.26, -.04) as well as the relationship between negative affect and burden (effect= .24, 95% bootstrap CI= .07, .48). A mediating relationship between dysfunctional coping and family functioning and burden was not supported. Discussion will highlight the implications of the study findings in developing innovative caregiver programs aimed at reducing dysfunctional coping and the broader theoretical implications of the role of affect in family caregivers of individuals with dementia.

Including individuals with dementia as participants in research studies can be a challenge given the cognitive symptoms experienced, including difficulties with attention, memory, language, and executive functioning and behavioral symptoms, such as agitation and frustration. Researchers, however, have begun to include individuals with dementia as more active participants in the research process. Specifically, individuals with dementia have provided self-report information about their illness experience, including how they cope and manage with their illness and how illness-related strains are related to psychosocial outcomes. Researchers also have starting using self-report data collection protocols instead of proxy-report measures to assess the impact of non-pharmacological interventions developed for individuals with dementia on well-being outcomes such as depressive symptoms, unmet needs, and relationship strain. To date, however, there are no clear guidelines or ‘best practices’ to assist researchers in developing study protocols that facilitate the inclusion and participation of individuals with dementia. This poster will present findings from a systematic literature review of studies that have successfully included individuals with dementia as research participants. Key areas examined include: 1) the focus and type of research question studied; 2) the use and type of cognitive screening tools for determining study eligibility; 3) implementation of qualitative versus quantitative research designs; 4) objective versus subjective measures; 5) data collection tools; 6) psychometric evidence of data obtained; and 7) how data have been analyzed. Findings highlight the importance of collecting data directly from individuals with dementia to further understand the illness experience and assess the impact of non-pharmacological interventions.

The impact of COVID-19 on dementia caregivers is gaining new interest. It is unknown how the pandemic has impacted caregivers’ burden and existential suffering. Analyses were performed on data for dementia caregivers (n=89) enrolled in the Indiana University Telephone Acceptance and Commitment Therapy for Caregivers (TACTICs) pilot trials. Individuals were primary caregivers of a family member with dementia and had clinically significant anxiety measured by a GAD-7 score &gt;10 or between 5-9 with reported interference in life. COVID-19 anxiety was measured using the NIH CoRonavIruS Health Impact Survey (CRISIS) questions. Caregivers were on average 55.2 years of age with 56.2% being child or child-in-law, 71.9% were white and 24.7% were Black. Mean burden scores, measured by the Zarit Burden Index, were higher (44.29) compared to means reported across the literature (26.7) indicating the sample experienced higher than normal levels of burden. Mean existential suffering scores measured by the subscale of Experience of Suffering Scale were lower (9.37) compared to means across the literature (11.5) indicating that overall participants experienced lower levels of existential suffering compared to those in previous studies. A significant relationship was found between COVID-19 anxiety and burden levels (x2= 9.07, p&lt;0.05), with higher levels of COVID-19 anxiety associated with greater burden. A non-significant relationship was found between COVID-19 anxiety and existential suffering (x2=5.99, p=0.11). Results highlight the impact of COVID-19 anxiety as an external stressor on dementia caregiving. and the importance of considering context of external stressors when implementing intervention protocols for caregivers of individuals with dementia.

Research supports the inclusion of individuals with mild to moderate dementia (IWDs) as study participants in providing reliable and valid self-report information about their illness experience. However, no clear guidelines or tools exist for determining study eligibility with many studies relying on brief cognitive measures (e.g., MMSE). The literature suggests not all individuals with mild/moderate dementia can participate and some individuals with severe symptoms of dementia can participate. This study piloted a new measure designed to assess whether IWDs can participate in self-report data protocols. The measure consists of 10 questions that assess relatively in-tact cognitive processes hypothesized for successful participation. Example questions include: “What is your favorite holiday?” and “Give an example of a sad occasion/event”. Questions are scored as ‘correct’ or ‘incorrect’ and summed for a total score. To examine the descriptive characteristics of the measure, IWDs (n=18) completed the measure along with the MMSE and, for some IWDs (n=12), several self-report measures. Scores on the new measure ranged from 0-10, with a M=7.61; SD=2.75. MMSE scores ranged from 2-22, with a M=13.39; SD=6.47. A significant correlation (r = .86, p&lt; .001) was found with the MMSE, indicating a high degree of relatedness but not complete construct overlap. Results also highlight the variability of the measure, with incorrect responses ranging from 3 to 6 across participants. Additional properties of the measure will be discussed along with highlighting how study findings fit with recommendations from 2020 NIA Research Summit on Dementia Care and next-steps in refinement and testing.