Characteristics associated with neuropsychiatric symptoms in persons living with dementia and caregiver distress and diminished well-being.

BACKGROUND: The population of persons living with dementia (PLWDs) is increasing, although mainstream dementia care quality is suboptimal. PURPOSE: To identify characteristics associated with: (1) PLWDs' neuropsychiatric symptoms and quality of life; and (2) distress from neuropsychiatric symptoms and well-being among their family caregivers (N = 49). METHODOLOGY: Cross-sectional single-group examination of PLWD and caregivers when they enrolled into a nurse-led dementia-centered primary care clinic. Pearson correlations were run between characteristics of PLWD and caregiver and variables representing PLWD's neuropsychiatric symptoms and quality of life and their caregivers' well-being. Statistically significant correlations were reported via Cohen d statistics. RESULTS: Caregivers' characteristics associated with higher distress from neuropsychiatric symptoms and diminished well-being included Black race, female gender, younger age, caring for a parent with dementia, and being employed. Characteristics of PLWD associated with caregivers' higher distress and diminished well-being included longer time since dementia onset, higher Charlson Comorbidity Index, and non-Alzheimer dementia. Caregivers' characteristics associated with higher neuropsychiatric symptom burden included Black race, female gender, younger age, caring for parent PLWD, and being employed. Characteristics of PLWDs associated with higher neuropsychiatric symptom burden included non-Alzheimer dementia, longer time since dementia onset, more comorbidities, and higher Charlson Comorbidity Index. Finally, a longer time since dementia onset was associated with PLWDs' lower quality of life. CONCLUSIONS: Black race, caring for caring for a parent with dementia, younger age, and being employed were characteristics linked to PLWDs' higher neuropsychiatric symptom burden and caregivers' diminished well-being. IMPLICATIONS: Clinicians must assess and intervene with unpaid caregivers who may not appear obviously distressed.

Attention control in a trial of an online psychoeducational intervention for caregivers.

In reports of randomized controlled trials, thorough description of the attention control condition has been recommended, yet is frequently lacking. The Tele-Savvy Caregiver program for informal caregivers of persons living with dementia was tested in a randomized controlled trial with an attention control condition. The purpose of this trial was to test Tele-Savvy's efficacy in reducing the negative effects of caregiving on caregivers, promoting quality of life for persons living with dementia, and improving caregiver mastery. We describe the design and implementation of and examine the outcomes associated with the attention control condition. Caregivers were randomized to the immediate Tele-Savvy (active condition), Healthy Living (attention control), or waitlist. The attention control content was focused on healthy lifestyle and was not intended to affect the outcomes that Tele-Savvy targeted. The attention control group was similar to Tele-Savvy in the intervention structure and duration: it consisted of seven weekly group videoconferences and 36 video lessons. Data on outcomes of caregivers and persons living with dementia were collected at baseline and 3 and 6 months postbaseline. Multilevel mixed effects models were used to determine changes in the outcomes. One hundred and eleven caregivers were randomized to the attention control condition (attrition 21.6%). Eighteen formative assessment interviews focusing on caregivers' experience in the attention control condition were conducted. The attention control condition completers had no statistically significant changes in the variables that Tele-Savvy targeted. These results may be used in the design and implementation of attention control conditions in behavioral intervention research.

Results of a Randomized Trial Testing the Efficacy of Tele-Savvy, an Online Synchronous/Asynchronous Psychoeducation Program for Family Caregivers of Persons Living with Dementia.

BACKGROUND AND OBJECTIVES: Family caregivers will grow in number as dementia prevalence increases, underscoring the continued importance of equipping these individuals for their new roles and ameliorating the adverse effects of caregiving. RESEARCH DESIGN AND METHODS: A three-armed, waitlist, randomized trial design tested Tele-Savvy, an online adaptation of a successful in-person psychoeducation program, the Savvy Caregiver. Tele-Savvy is delivered over 43 days to groups of 6-8 caregivers in 7 weekly synchronous sessions accompanied by 36 brief asynchronous video lessons. We enrolled 23 cohorts of 15 eligible caregivers (N = 261), randomized 2:2:1 to active, attention control, and usual care arms. We assessed caregiver psychological well-being and caregiving mastery at baseline and 3, 6, 9, and 12 months. Multilevel linear models assessed outcomes over the 3 time points examined. The trial was slightly truncated, with Data and Safety Monitoring Board approval, because of the apparent confounding psychological effects of coronavirus disease 2019 restrictions. RESULTS: Study findings indicate statistically and clinically significant benefits to Tele-Savvy arm caregivers (with moderate to large effect sizes) in the areas of depression, perceived stress, reaction to care recipients' behaviors, and enhancement of caregiver mastery. Expected benefits for caregiver burden and anxiety were not found. DISCUSSION AND IMPLICATIONS: Findings attest to program efficacy and the viability of employing distance means to improve family caregivers' emotional well-being and sense of mastery in the caregiving role over a 6-month period. Next steps entail finding alternate ways to deliver the program to those with connectivity and/or time constraint problems.

Caregivers' Experience at an Integrated Memory Care Clinic.

The Integrated Memory Care Clinic is a patient-centered medical home led by advanced practice RNs (APRNs) who provide dementia care and primary care simultaneously and continuously. We explored the experiences of 12 informal caregivers of persons living with dementia during their first year at the Clinic. Data were analyzed via directed content analysis. Caregivers described the Clinic as "the only place you should go to for dementia [care]." Caregivers felt a sense of belonging to the Clinic, valued APRNs' competence and staff's dedication, and round-the-clock telephone access to APRNs. Caregivers also acknowledged that "we're all out here swimming on our own." They expressed their sense of being overwhelmed and needing more services and medical and non-medical resources, and more prognostic information on dementia. Although the Clinic is beneficial for caregivers, caregiving demands exceed the supply of services and resources at the Clinic. [Research in Gerontological Nursing, 14(2), 69-78.].

Patient and caregiver outcomes at the integrated memory care clinic.

The purpose of this longitudinal cohort study was to explore the outcomes of persons living with dementia (PLWD) and their caregivers during their first 9 months at the Integrated Memory Care Clinic (IMCC). IMCC advanced practice registered nurses provide dementia care and primary care simultaneously and continuously to PLWD until institutionalization. Changes were examined in caregivers' psychological well-being (perceived stress, depressive symptoms, caregiver burden, and anxiety) and health status and in PLWDs' quality of life and neuropsychiatric symptoms. Data were collected at baseline, then 3 and 6 months post-baseline. Forty-two caregivers completed all 3 assessments. Most variables remained unchanged. Statistically significant improvements in 5 sub-scales of the Neuropsychiatric Inventory were observed: caregivers' distress regarding their PLWDs' delusions and anxiety, and PLWDs' severity of delusions, depression, and total symptom severity. Further testing of the IMCC is required, including in quasi-experimental studies, to determine its efficacy.

The TechSAge Minimum Battery: A multidimensional and holistic assessment of individuals aging with long-term disabilities.

BACKGROUND: People with disabilities acquired in early to mid-life are living longer, contributing to growing numbers of older adults who are aging with disability, an understudied population likely to be underserved. OBJECTIVES: This paper demonstrates the usefulness of the TechSAge Minimum Battery as a holistic assessment of health for people aging with disabilities. METHODS: Survey data of socio-demographic and health characteristics were collected from 176 older adults with long-term vision, hearing, and/or mobility disabilities. A series of descriptive and bivariate analyses were conducted to illustrate the heterogeneity of the sample. An in-depth analysis of the subsample with vision difficulty was conducted to highlight the tool's value in assessing detailed contextual information for a specific disability. RESULTS: Prevalence of health conditions (M = 4.1; SD = 2.5), prescription medications (M = 4.1; SD = 3.9), and serious functional difficulties (M = 1.6; SD = 0.85) indicated a fair degree of comorbidity, but with considerable variation in number and type among individuals. Subjective health ratings were high overall, but lower scores were correlated with additional comorbidities (r = -0.31-0.40, p =<.001). Analyses of the subsample with vision difficulty demonstrated heterogeneity in functional capacity, degree of impairment, duration, and use of supportive aids. CONCLUSIONS: Findings highlighted the heterogeneity among people aging with disability and demonstrated the importance of capturing multi-dimensional factors inclusive of an individual's capacity, context, and personal factors, which the Minimum Battery provides in an integrated assessment. Potential healthcare applications of the tool are discussed with implications for bridging aging and disability services.

GRECC Connect: Geriatrics Telehealth to Empower Health Care Providers and Improve Management of Older Veterans in Rural Communities.

A telehealth program supports meaningful partnerships between urban geriatric specialists and rural health care providers to facilitate increased access to specialty care.

An Online Program for Caregivers of Persons Living With Dementia: Lessons Learned.

The population of individuals living with dementia and their caregivers and the need to provide caregiver training will increase in the next several decades. In-person caregiver educational programs are delimited by logistical and resource boundaries that could be overcome with online programs. The purpose of this qualitative descriptive study was to explore the acceptability and ways to improve the content and delivery of an online 7-week psychoeducational pilot program-Tele-Savvy. Thirty-six caregivers who completed the pilot were interviewed about their experience with Tele-Savvy and their suggestions for its improvement. Conventional content analysis allowed for the identification of three themes: barriers and facilitators to establishing rapport with participants and instructors, content enrichment and diversification, and structural refinement. These lessons learned directly from the caregivers provide evidence to guide the refinement of analogous online interventions and highlight the need for their wider availability.

Acupuncture for Treatment of Persistent Disturbed Sleep: A Randomized Clinical Trial in Veterans With Mild Traumatic Brain Injury and Posttraumatic Stress Disorder.

OBJECTIVE: To evaluate real, as compared with sham, acupuncture in improving persistent sleep disturbance in veterans with mild traumatic brain injury (mTBI) and posttraumatic stress disorder (PTSD). METHODS: This sham-controlled randomized clinical trial at a US Department of Veterans Affairs Medical Center (2010-2015) included 60 veterans aged 24-55 years (mean of 40 years) with history of mTBI of at least 3 months and refractory sleep disturbance. Most of these participants (66.7%) carried a concurrent DSM-IV clinical diagnosis of PTSD. For the present study, they were randomized into 2 groups and stratified by PTSD status using the PTSD Checklist-Military Version. Each participant received up to 10 treatment sessions. The primary outcome measure was change in baseline-adjusted global Pittsburgh Sleep Quality Index (PSQI) score following intervention. Secondary outcomes were wrist-actigraphy-assessed objective sleep measurements. Comorbid PTSD was analyzed as a covariate. RESULTS: Mean (SD) preintervention global PSQI score was 14.3 (3.2). Those receiving real acupuncture had a global PSQI score improvement of 4.4 points (relative to 2.4 points in sham, P = .04) and actigraphically measured sleep efficiency (absolute) improvement of 2.7% (relative to a decrement of 5.3% in sham, P = .0016). Effective blinding for active treatment was maintained in the study. PTSD participants presented with more clinically significant sleep difficulties at baseline; acupuncture was effective for both those with and without PTSD. CONCLUSIONS: Real acupuncture, compared with a sham needling procedure, resulted in a significant improvement in sleep measures for veterans with mTBI and disturbed sleep, even in the presence of PTSD. These results indicate that an alternative-medicine treatment modality like acupuncture can provide clinically significant relief for a particularly recalcitrant problem affecting large segments of the veteran population. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT01162317.

Tele-Savvy: An Online Program for Dementia Caregivers.

INTRODUCTION: This study examined the feasibility and efficacy of Tele-Savvy, an online version of the Savvy Caregiver Program, a psychoeducation program for caregivers caring for a person with dementia. METHODS: A convenience sample of 22 caregivers from the Atlanta VA and 42 caregivers from 14 different states enrolled in Tele-Savvy. Pre- and post-program evaluations assessed caregiver burden, caregiver competency, and frequency of behavioral and psychological symptoms of dementia (BPSD). RESULTS: Fifty-seven caregivers completed the 6-week Tele-Savvy program. Caregivers whose care recipients exhibited higher average BPSD frequency at baseline demonstrated significantly greater burden decreases post-program. Caregivers of care recipients in more advanced dementia stages demonstrated a significantly greater improvement in caregiver competence. DISCUSSION: The results point to the feasibility of achieving significant results in caregivers' well-being and care recipients' BPSD with a fully online program. Tele-Savvy may be particularly efficacious for caregivers whose care recipients exhibit higher BPSD frequency and are in later dementia stages.

Testing Tele-Savvy: Protocol for a randomized controlled trial.

Many informal caregivers of persons with dementia suffer adverse health consequences. Although established psychoeducation programs are known to benefit caregivers, attending in-person programs is challenging for them. To address this challenge, the Savvy Caregiver Program, an evidence-based psychoeducation program with demonstrated effectiveness for caregiving and disease-related outcomes, was transformed into an on-line program, Tele-Savvy. This article describes the rationale for and design of a prospective longitudinal randomized controlled trial (targeted N = 215), currently underway. The trial aims to establish Tele-Savvy's efficacy in (i) reducing the negative effects of caregiving on caregivers; (ii) promoting care recipients' quality of life; (iii) improving caregiver mastery; and to explore (iv) Tele-Savvy's efficacy among caregivers of different races/ethnicities. The mediating role of mastery will be assessed. Participants are randomized to the active condition (immediate Tele-Savvy participation), attention control, or usual care. Participants in the two latter conditions will complete Tele-Savvy 6 months post-baseline. Multilevel mixed effects models will be used to examine changes in outcomes and to model group by time (months since baseline) interactions. The exploratory aim will be addressed using analysis of covariance and qualitative analysis. This trial's results may be used by healthcare and community organizations to implement Tele-Savvy in dementia care, increasing caregivers' access to this evidence-based intervention.

Development and Implementation of Tele-Savvy for Dementia Caregivers: A Department of Veterans Affairs Clinical Demonstration Project.

PURPOSE OF THE STUDY: To test fidelity and preliminary efficacy of Tele-Savvy, an internet-based version of the in-person, evidence-based psychoeducation Savvy Caregiver Program (SCP) for dementia caregivers. Tele-Savvy used synchronous (tele-conferences) and asynchronous components (video modules) to provide program access to caregivers in their homes. DESIGN AND METHODS: SCP experts were surveyed to evaluate Tele-Savvy's fidelity to SCP. A convenience sample of 30 dementia caregivers from the Atlanta VA Medical Center enrolled in the Tele-Savvy clinical demonstration program. Twenty-two caregivers completed both pre- and postprogram evaluations, which included measures of caregiver stress and competence and behavioral and psychological symptoms of dementia (BPSD). RESULTS: Expert review confirmed Tele-Savvy's fidelity with and, in certain domains, improvement on the original. Participants demonstrated moderately high initial levels of burden, anxiety, and depressive symptoms all of which decreased significantly postprogram in an intention to treat analysis. Similar reductions were seen in care recipients' BPSD and caregivers' reactions to them. Marginally significant increases in caregiver competence were observed. Caregiver and expert panel evaluations of program quality were enthusiastic. IMPLICATIONS: An effective online caregiver psychoeducation program could provide greatly expanded access for caregivers who cannot attend in person for reasons of distance, transportation limitations, and caregiving responsibilities. Further testing in a controlled trial is needed to establish program efficacy.

The effects of in-home rehabilitation on task self-efficacy in mobility-impaired adults: A randomized clinical trial.

OBJECTIVES: To examine the effect on mobility self-efficacy of a multifactorial, individualized, occupational/physical therapy (OT/PT) intervention delivered via teletechnology or in-home visits. DESIGN: Randomized, clinical trial. SETTING: One Department of Veterans Affairs and one private rehabilitation hospital. PARTICIPANTS: Sixty-five community-dwelling adults with new mobility devices. Thirty-three were randomized to the control or usual care group (UCG), 32 to the intervention group (IG). INTERVENTION: Four, once-weekly, 1-hour OT/PT sessions targeting three mobility and three transfer tasks. A therapist delivered the intervention in the traditional home setting (trad group n = 16) or remotely via teletechnology (tele group n = 16). MEASUREMENTS: Ten-item Likert-scale measure of mobility self-efficacy. RESULTS: The IG had a statistically significantly greater increase in overall self-efficacy over the study period than the UCG (mean change: IG 8.8, 95% confidence interval (CI) = 3.8-13.7; UCG 1.2, 95% CI = -5.8-8.2). Descriptively, the IG exhibited positive changes in self-efficacy for all tasks and greater positive change than the UCG on all items with the exception of getting in and out of a chair. Comparisons of the two treatment delivery methods showed a medium standardized effect size (SES) in both the tele and trad groups, although it did not reach statistical significance for the tele group (SES: tele = 0.35, 95% CI = -2.5-0.95; trad = 0.54, 95% CI = 0.06-1.14). CONCLUSION: A multifactorial, individualized, home-based OT/PT intervention can improve self-efficacy in mobility-impaired adults. The trend toward increased self-efficacy irrespective of the mode of rehabilitation delivery suggests that telerehabilitation can be a viable alternative to or can augment traditional in-home therapy.

Development of a teletechnology protocol for in-home rehabilitation.

Our ability to provide in-home rehabilitation is limited by distance and available personnel. We may be able to meet some rehabilitation needs with videoconferencing technology. This article describes the feasibility of teletechnology for delivering multifactorial, in-home rehabilitation interventions to community-dwelling adults recently prescribed a mobility aid. We used standard telephone lines to provide two-way video and audio interaction. The interventions included prescription of and/or training in functionally based exercises, home-hazard assessment, assistive technology, environmental modifications, and adaptive strategies. Patients were evaluated in three transfer and three mobility tasks, and appropriate treatment was provided over the course of four visits. To date, 13 of the 14 subjects enrolled in the rehabilitation study have completed all four visits (56 visits total). Equipment-related problems were most common early in the study, particularly on the initial visit to a subject's house. We identified (mean +/- standard deviation [SD]) 13.1 +/- 7.9 mobility/self-care problems per subject and made 12.5 +/- 8.3 recommendations per subject to address those problems. At 6-week follow-up, 60.1 percent of our recommendations had been implemented. The greatest number of problems was identified for tub transfers (mean +/- SD = 3.4 +/- 1.4), the greatest number of recommendations was made for toilet transfers (mean +/- SD = 3.1 +/- 3.4), and the most frequently implemented recommendations were for transition between locations. Overall, our results show promise that both the telerehabilitation technology and intervention procedures are feasible.

Functional incidental training: a randomized, controlled, crossover trial in Veterans Affairs nursing homes.

OBJECTIVES: To test the effects of a rehabilitative intervention directed at continence, mobility, endurance, and strength (Functional Incidental Training (FIT)) in older patients in Department of Veterans Affairs (VA) nursing homes. DESIGN: Randomized, controlled, crossover trial. SETTING: Four VA nursing homes. PARTICIPANTS: All 528 patients in the nursing homes were screened; 178 were eligible, and 107 were randomized to an immediate intervention group (Group 1; n=52) and a delayed intervention group (Group 2; n=55). INTERVENTION: Trained research staff provided the FIT intervention, which included prompted voiding combined with individualized, functionally oriented endurance and strength-training exercises offered four times per day, 5 days per week, for 8 weeks. Group 1 received the intervention while Group 2 served as a control group; then Group 2 received the intervention while Group 1 crossed over to no intervention. A total of 64 subjects completed the intervention phase of the trial. MEASUREMENTS: Timed measures of walking or wheeling a wheelchair (mobility), sit-to-stand exercises, independence in locomotion and toileting as assessed using the Functional Independence Measure (FIM), one-repetition maximum weight for several measures of upper and lower body strength, frequency of urine and stool incontinence, and appropriate toileting ratios. RESULTS: There was a significant effect of the FIT intervention on virtually all measures of endurance, strength, and urinary incontinence but not on the FIM for locomotion or toileting. The effects of FIT were observed when Group 1 received the intervention and was compared with the control group and when Group 2 crossed over to the intervention. Group 1 deteriorated in all measures during the 8-week crossover period. Within-person comparisons also demonstrated significant effects on all measures in the 64 participants who completed the intervention; 43 (67%) of these participants were "responders" based on maintenance or improvement in at least one measure of endurance, strength, and urinary incontinence. No adverse events related to FIT occurred during the study period. CONCLUSION: FIT improves endurance, strength, and urinary incontinence in older patients residing in VA nursing homes. Translating these positive benefits achieved under research conditions into practice will be challenging because of the implications of the intervention for staff workload and thereby the costs of care.

Pain perceptions of the oldest old: a longitudinal study.

PURPOSE: This study assessed self-reported pain in the oldest old and examined its changes over time and in relation to other measures of health and functioning. DESIGN AND METHODS: A population-based sample of the oldest old (86-92 years of age) residing in Sweden who were participating in a multiwave longitudinal investigation were interviewed about their experience of pain, as well as other dimensions of health and functioning. RESULTS: Prevalence of pain at baseline was 34% and rose to 40% at follow-up. Incidence of new pain cases during that period was 16 percent. Pain was significantly related to sleep difficulties, medication usage, global subjective health, depressive symptoms, and mobility, though the magnitude of the associations was relatively small. IMPLICATIONS: Our results extend previous cross-sectional findings by demonstrating there is both an increase in the proportion of people reporting pain over time after the age of 85 as well as the possibility of recovery. The modest strength of associations of pain with other areas of functioning suggests adaptation and selectivity among survivors in very late life.