Background
Caregiving for persons with dementia negatively impacts physical and mental health, including increased risk for chronic loneliness and isolation. This Phase I study aimed to recruit ...former and current dementia caregivers as engaged partners in the design of a unique, technology‐assisted pairing platform to match caregivers to one another for meaningful connection and support based on characteristics chosen by the caregivers themselves.
Method
We recruited thirty‐two caregivers to participate in two semi‐structured focus groups (audio recorded for qualitative analyses) and complete a survey to understand the characteristics desired in another caregiver for the purpose of emotional support. Participants interacted with a website prototype on their personal device and completed a user experience feedback form. An iterative process was used to design the website and matching questionnaire allowing participants to validate preferences and concerns. Website analytics were captured (e.g. time to answer each question, total time spent on the website).
Result
The efforts culminated in a website ‘look and feel’ that addressed the preferences and criticisms of study participants. Figure 1 shows the home page slider inviting caregivers to join (images 1‐3) and describes the matching process (4); the caregiver answers up to 34 questions to create a profile (5‐7) and the website provides a list of caregivers that best match criteria (8). Overall, 87% of study participants rated a high level of comfort with completing the personal profile questions; 82% felt confident the questions asked would lead to a good match. An algorithm to match caregivers was created using the profile questions which asked participants to self‐select and then rank the characteristics of highest importance. Good and poor matches are scored by the algorithm, with 1 being a “perfect” match (Figure 2). In the current cohort, each participant had at least one match that scored 0.708 or higher.
Conclusion
Our study established interest in a technology assisted peer‐to‐peer caregiver matching program that is a potential low‐cost, high‐impact resource. The study resulted in a set of matching characteristics and an algorithm prototype within a user influenced website and will be further tested in Phase 2. Research supported from NIA of the NIH.
IntroductionDementia with Lewy bodies (DLB) is one of the most common degenerative dementias. Despite the fact that most individuals with DLB die from complications of the disease, little is known ...regarding what factors predict impending end of life or are associated with a quality end of life.Methods and analysisThis is a multisite longitudinal cohort study. Participants are being recruited from five academic centres providing subspecialty DLB care and volunteers through the Lewy Body Dementia Association (not receiving specialty care). Dyads must be US residents, include individuals with a clinical diagnosis of DLB and at least moderate-to-severe dementia and include the primary caregiver, who must pass a brief cognitive screen. The first dyad was enrolled 25 February 2021; recruitment is ongoing. Dyads will attend study visits every 6 months through the end of life or 3 years. Study visits will occur in-person or virtually. Measures include demographics, DLB characteristics, caregiver considerations, quality of life and satisfaction with end-of-life experiences. For dyads where the individual with DLB dies, the caregiver will complete a final study visit 3 months after the death to assess grief, recovery and quality of the end-of-life experience. Terminal trend models will be employed to identify significant predictors of approaching end of life (death in the next 6 months). Similar models will assess caregiver factors (eg, grief, satisfaction with end-of-life experience) after the death of the individual with DLB. A qualitative descriptive analysis approach will evaluate interview transcripts regarding end-of-life experiences.Ethics and disseminationThis study was approved by the University of Florida institutional review board (IRB202001438) and is listed on clinicaltrials.gov (NCT04829656). Data sharing follows National Institutes of Health policies. Study results will be disseminated via traditional scientific strategies (conferences, publications) and through collaborating with the Lewy Body Dementia Association, National Institute on Aging and other partnerships.
Background
Black/African Americans (B/AA) are nearly twice as likely as White/European Americans (W/EA) to have Alzheimer’s or other dementias and are more likely to provide care for persons with ...dementia (PwD). Evidence indicates that B/AA desire having someone to talk with who understands their caregiving challenges, yet are less likely than W/EA to ask for support. Further, community resources supporting caregivers’ ability to maintain health and well‐being developed with input from B/AA are lacking. We aimed to determine how a technology‐assisted caregiver matching service designed with user input could address diverse caregiver needs.
Methods
For this Phase I project, 32 caregivers of PwD (31% B/AA) participated in semi‐structured focus groups and completed surveys to provide input regarding characteristics deemed valuable in someone they would choose to be connected with for emotional support. Through an iterative process as new information emerged, a web‐based prototype and matching algorithm were developed.
Results
Age and sex distribution were similar between B/AA and W/EA (71 and 68 yrs; 90% and 86%, respectively). W/EA were most likely caring for a spouse/significant other (73%) whereas B/AA were caring for spouse/significant other (30%), a parent (30%;18% W/EA), a sibling (10%; 0% W/EA), or other (30%; 9%W/EA). Level of emotional support was rated “poor” (50% B/AA, 18% W/EA); “average” (0% B/AA, 14% W/EA); “good” (40% B/AA, 41% W/EA); and “excellent” (10%, 27% W/EA). Characteristics B/AA deemed “very important” or “absolutely essential” for a supportive match included living in close proximity, same ethnicity, similar lifestyle, and common values. Alternatively, W/EA selected similar age, living in close proximity, same sex, similar lifestyle, common values and interests, having the same caregiving relationship, and having the same diagnosis in their PwD (see chart).
Conclusion
In this cohort, B/AA reported poorer levels of emotional support than W/EA. B/AA were equally likely to be supporting a spouse/significant other as a parent or other acquaintance, whereas W/EA provided support primarily for a spouse/significant other. Characteristics B/AA and W/EA consider important in a supportive caregiver match show important differences that should be considered when optimizing caregiving resources. Phase II will explore further in a much larger sample.
This pilot study examined the functional impact of computerized versus compensatory calendar training in cognitive rehabilitation participants with mild cognitive impairment (MCI). Fifty-seven ...participants with amnestic MCI completed randomly assigned calendar or computer training. A standard care control group was used for comparison. Measures of adherence, memory-based activities of daily living (mADLs), and self-efficacy were completed. The calendar training group demonstrated significant improvement in mADLs compared to controls, while the computer training group did not. Calendar training may be more effective in improving mADLs than computerized intervention. However, this study highlights how behavioral trials with fewer than 30-50 participants per arm are likely underpowered, resulting in seemingly null findings.
Introduction
The patient-centered movement advocates for greater attention to the outcomes that matter most to patients and their families. In neurodegenerative disease, determination of patient and ...caregiver priorities has received scant attention in part because dementia patients are deemed unreliable reporters. However, people with mild cognitive impairment (MCI) likely retain capacity to report their preferences.
Methods
In two separate MCI cohorts, we conducted preliminary analyses of patient and caregiver priorities among seven patient and five caregiver outcomes of the HABIT
®
Healthy Action to Benefit Independence & Thinking program (Mayo Clinic, Rochester, MN, USA).
Results
Via interview and paper-and-pencil reporting both patient and caregiver respondents’ ranked patient and caregiver quality of life and patient self-efficacy as highest priorities, ranking them ahead of patient and caregiver mood, patient functional status, patient distressing behaviors and caregiver burden. Patients and caregivers tended to value the outcomes for their loved ones higher than their own outcomes.
Conclusion
Caregivers appeared to be reasonable, but not perfect, proxies for patient reports. Additional research with larger cohorts and a more comprehensive range of outcomes is needed.
The first Lewy Body Dementia Association (LBDA) Research Centers of Excellence (RCOE) Investigator's meeting was held on December 14, 2017, in New Orleans. The program was established to increase ...patient access to clinical experts on Lewy body dementia (LBD), which includes dementia with Lewy bodies (DLB) and Parkinson's disease dementia (PDD), and to create a clinical trials-ready network. Four working groups (WG) were created to pursue the LBDA RCOE aims: (1) increase access to high-quality clinical care, (2) increase access to support for people living with LBD and their caregivers, (3) increase knowledge of LBD among medical and allied (or other) professionals, and (4) create infrastructure for a clinical trials-ready network as well as resources to advance the study of new therapeutics.
There is a growing emphasis on delivering services for persons with early-stage dementia (ie, ‘‘persons with memory loss,’’ or PWMLs) and their family members (care partners). The goal of this ...evaluation was to determine whether participation in the Memory Club, a 10- to 13-session joint support group, would result in decreased distress, enhanced preparation for care, and improved feelings of confidence managing the challenges of early-stage dementia. The single group, pre-/post-test evaluation included 63 PWMLs and 61 care partners who participated in three Memory Club sites in Minnesota. Paired T-test results found that care partners reported significant (P < .05) increases in preparation activities, feelings of preparation, and confidence in managing memory loss. The results suggest that the Memory Club can fill an important gap in early-stage dementia care by offering care partners the opportunity to plan, prepare, and increase coping skills in the face of early dementia progression.
Medication safety is a special concern for the 30% to 40% of dementia patients who live alone at the time of diagnosis, and it plays an important part in relocation decisions. Televideo monitoring ...could improve medication self-administration accuracy and improve mood for persons with mild dementia who live alone or spend a significant amount of their day alone. The authors used 2-way interactive video technology to monitor medication compliance of 8 persons with mild dementia. They conducted more than 4000 contacts with these persons and found adequate technical outcome in 82% of calls. End medication compliance was 81% in the video-monitored group compared to 66% in the controls (P < .05). Comparison of compliance from initial to end ratings revealed that video-monitored participants’ compliance remained stable while unmonitored patients’ compliance fell 12 percentage points, consistent with expectations for dementia. This difference was also significant. Quantitative and qualitative outcome data from this project are presented.
Background
Financial management is one of the most cited sources of stress among caregivers. Legal planning presents additional challenges. Only a small percentage of dementia caregivers report ...successfully completing necessary planning. Further, persons with dementia are vulnerable to fraud, scam, and inappropriate financial transactions. With stakeholder participation, we explored a novel solution using state‐of‐the‐art technology aimed to overcome impediments that have plagued prior legal and financial planning resources.
Method
18 stakeholders from 10 organizations across the U.S. serving persons with dementia and caregivers participated in two 60 to 90‐minute semi‐structured interviews that were recorded and transcribed. Qualitative stakeholder input was collected through an iterative process. During initial interviews, a mockup was shared to elicit feedback. There was a 3‐month wait after the first interviews to incorporate recommendations into the evolving prototype. During the second round of interviews, stakeholders evaluated the prototype progress based on feedback they previously provided. Stakeholders then completed an electronic survey to assess their overall confidence in the value of the future tool. A phase 1 prototype was designed using Adobe XD. Stakeholders influenced the content, layout, colors, and images with goals of clarity, usability, legibility, and simplicity. Included are a ‘how the tool works’ section; a wizard that guides users through a topic by asking questions, responding appropriately, a prioritized to‐do list; a chatbot; and a dashboard for viewing progress and sharing with selected care partners. Responses to questions were generated by legal and financial experts.
Result
All 18 stakeholders confirmed that financial management and legal planning are highly stressful for persons with dementia and their families and that there is a need for a tool of this type. 85% of the stakeholders indicated that were extremely satisfied, or very satisfied that the tool would be a beneficial product.
Conclusion
Results confirmed the need for and utility of an easy‐to‐use tool assisting in legal and financial planning. Phase 2 will incorporate additional content and features along with further review from legal and financial experts. Persons living with dementia and care partners will be included in the testing, evaluation, and further refinement of the technology tool.
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