Use of Actigraphy on sleep outcomes for dementia family caregivers: an integrative review

Abstract Sleep difficulties are one of the foremost health problems that affect family caregivers of dementia patients increasing their risk for a host of mental health problems and hastening dementia patients’ transitions to long-term care facilities. This integrative review aims to describe the objective measurement of sleep quality parameters of family caregivers using actigraphy and how well they are associated with self-reported subjective measures of sleep outcomes and psychological states. A search was performed using PubMed, CINAHL, and PsycInfo including articles from 2011 to 2020. Twenty studies met the inclusion criteria. Five sleep interventions (2 RCTs and 3 pre-post design) were found, including multi-component interventions (e.g., sleep hygiene, walking, day-time light therapy) that used actigraphy and other self-report measures. Duration of wearing actigraphy (wrist band/watch) varied in studies (3-days to 8-weeks). Most studies reported high accuracy and sensitivity of actigraphy. Sleep parameters measured by actigraphy included ‘total sleep time’, ‘sleep efficiency’, ‘deep/light sleep’, or ‘wake time after sleep onset’. In eight studies, sleep parameters measured by actigraphy were significantly associated with sleep outcomes measured by sleep related self-reported scales (Epworth Sleepiness Scale, Pittsburgh Sleep Quality Index, all Ps<.05). Eleven studies used actigraphy to examine sleep measures associated with various mental health states (depression, burden, stress, positive/negative affect) and found significant relationships (All Ps <.05). Findings support that use of actigraphy for dementia family caregivers is a valid measure of sleep parameters when compared with their sleep self-reports. Furthermore, it was found that actigraphy sleep measures were significantly associated with psychological outcomes.

and Sato Ashida, University of Iowa, Iowa City, Iowa, United States Individuals with dementia increasingly rely on caregivers for daily oral care over time.This study explored the experience of family caregivers of community-dwelling individuals with dementia in providing oral care and their interest in caregiver oral education using the concepts of Social Cognitive Theory.Twenty-three caregivers ages 19-80 participated in a semi-structured qualitative interview that also included a structured questionnaire.Majority of caregivers were female (83%) with an average age of 56 years; 29% were spouses.Fifty-four percent of care recipients had natural teeth only, 42% had teeth and dentures, and 4% had dentures only.Caregivers were generally knowledgeable about the importance of oral health, but some expressed a lack of knowledge in how to perform oral care for others.Caregivers reported high levels of outcome expectation, agreeing that providing oral care would improve care recipient's oral health.Caregivers expressed mixed levels of self-efficacy; many cited reduced self-efficacy due to resistance or refusal of care.Quantitative data showed that higher confidence in knowledge and oral care skills was associated with greater confidence in providing oral care (r=0.726,p<0.001).Intent to participate in a caregiver oral health education program was associated with positive outcome expectations (r=0.73,p=0.007) and desire to learn the signs and symptoms of mouth pain and infection (r=0.72,p=0.009).Increasing family caregiver's oral health knowledge and skills, outcome expectations, and self-efficacy to provide care may help improve the oral health of persons with dementia.Additional qualitative and quantitative data and implications for practice will be presented.

USE OF ACTIGRAPHY ON SLEEP OUTCOMES FOR DEMENTIA FAMILY CAREGIVERS: AN INTEGRATIVE REVIEW
Eunae Ju, 1 Melissa Pinto, 1 and Jung-Ah Lee, 2 1.University of California Irvine, Irvine, California, United States, 2. University of California, Irvine, Irvine, California, United States Sleep difficulties are one of the foremost health problems that affect family caregivers of dementia patients increasing their risk for a host of mental health problems and hastening dementia patients' transitions to long-term care facilities.This integrative review aims to describe the objective measurement of sleep quality parameters of family caregivers using actigraphy and how well they are associated with self-reported subjective measures of sleep outcomes and psychological states.A search was performed using PubMed, CINAHL, and PsycInfo including articles from 2011 to 2020.Twenty studies met the inclusion criteria.Five sleep interventions (2 RCTs and 3 pre-post design) were found, including multi-component interventions (e.g., sleep hygiene, walking, day-time light therapy) that used actigraphy and other selfreport measures.Duration of wearing actigraphy (wrist band/watch) varied in studies (3-days to 8-weeks).Most studies reported high accuracy and sensitivity of actigraphy.Sleep parameters measured by actigraphy included 'total sleep time', 'sleep efficiency', 'deep/light sleep', or 'wake time after sleep onset'.In eight studies, sleep parameters measured by actigraphy were significantly associated with sleep outcomes measured by sleep related self-reported scales (Epworth Sleepiness Scale, Pittsburgh Sleep Quality Index, all Ps<.05).Eleven studies used actigraphy to examine sleep measures associated with various mental health states (depression, burden, stress, positive/negative affect) and found significant relationships (All Ps <.05).Findings support that use of actigraphy for dementia family caregivers is a valid measure of sleep parameters when compared with their sleep self-reports.Furthermore, it was found that actigraphy sleep measures were significantly associated with psychological outcomes.

UTILIZATION OF SOCIAL MEDIA PEER SUPPORT GROUPS AMONG FAMILY CAREGIVERS OF PATIENTS WITH DEMENTIA Mary Dioise Ramos, Kennesaw State University, Kennesaw, Georgia, United States
Caring for a family member with dementia is particularly challenging.Unpaid family caregivers provide a significant amount of the care for aging relatives, and they provide the vast majority of long-term care.Family caregiving often results in negative effects, which compromises the caregiver's physical and psychosocial health.Social media support groups are an increasingly common venue for family caregivers supporting patients with dementia to exchange emotional, informational, and instrumental support.This study examined the utilization of social media support groups among family caregivers of patients with dementia during the pandemic.Using deductive thematic analysis, the use of social media support groups of family caregivers provide link to social interaction as a means when social distancing is enforced due to the pandemic.Family caregivers use social media support groups to share their personal experience, express their mood and feelings, offer prayers and positive quotes, keep up with the current events, gather information, and share feedback about dementia care services.Awareness of the potential advantages that social media support groups offer, healthcare providers can encourage family caregivers to use social media support groups as an empowering and practical platform.Further research is required about the long term benefit from social media support groups and the reliability and validity of the information that the family caregivers can get from the group.

. UT Austin, UT Austin, Texas, United States
It is unclear how ambiguous loss in dementia caregiving is impacted by conditions of the Covid-19 pandemic.Ambiguous loss describes situations in which closure is impossible and ambiguities within a family system ensue.Two situations of ambiguous loss exist.In the first type, one is psychologically absent, yet physically present, e.g. when one has dementia.In the second type, one is physically absent but psychologically present, e.g.moving to a nursing home.Ambiguous loss theory was applied to longitudinal interviews with an adult-child caregiver (age=52) of a mother with dementia, who resided in memory care during the Covid-19 pandemic.Theoretical analysis revealed both types of ambiguous loss were experienced in the dementia caregiving relationship.This was embedded within ambiguous loss type 2 due to the Covid-19 pandemic, e.g.social distancing and quarantine practices led to physical estrangement from others and ambiguity ensued about when, or if, estrangement would end before resulting in death.Further, the coping mechanisms defined in the ambiguous loss framework: restructuring identity, finding meaning, gaining mastery, increasing ambivalence capacity, reframing attachments, and gaining hope, were compromised due to overarching ambiguous loss attributed to the pandemic.Continued panic and frustration regarding lack of communication with and access to the memory care center instilled a sense of being "locked out of caregiving."Findings suggest dementia caregivers may experience both types of ambiguous loss compounded during the Covid-19 pandemic, suspending grief and coping processes, and inciting poorly understood needs and challenges that must be better understood to support dementia caregivers.

A NATURAL EXPERIMENT CREATED BY PANDEMIC RESTRICTION: COMPARING IN-PERSON, HYBRID, & TELETHERAPY FORMATS
Tracy Wharton, 1 and Daniel Paulson, 2 1.University of Central Florida,Winter Springs,Florida,United States,2. University of Central Florida,Orlando,Florida,United States The FL-REACH intervention for families in early stage post-dementia diagnosis was originally adapted from the REACH II program for use in an outpatient clinic.Pandemic restrictions forced an adaptation to a teletherapy format.The timing of changes allowed comparison of caregivers who participated in clinic (n=10), switched modalities mid-treatment (n=7), and participated as teletherapy (n=14).Groups were similar in age range, gender, and relationship, with both spouses and adult children participating.Participants in the fully online group were more likely than others to have high school or trade school education than to have graduated from college.All participants in the in-person and hybrid groups had incomes over $40,000/year, while 36% of the online sample had less household income, were more likely to be Hispanic-identifying (43% versus 6%), and had higher burden scores (M=41.43versus M=32.56 in person, M=29.86 hybrid) and lower preparedness scores (M=19.86versus M=22.90 in person, M=28.14 hybrid) at baseline (p<.05).The intervention proceeded with the same intervention dosage (8 hours total), and outcomes were essentially comparable, with all groups showing statistically significant improvement on measures of preparedness, burden, and risk.While in-person intervention helped strengthen relationships with the medical team, inclusion of family via telehealth provided opportunity for a more culturally responsive and inclusive engagement, although there remain questions regarding reasons for differences at baseline.Identification of differences in key outcomes for direct comparisons between in-person, hybrid, and teletherapy interventions are limited