Dementia Caregivers Research Articles

Design insights from dementia caregivers and therapists for a therapeutic music app

There are over 6.5 million Americans living with dementia, with as many as 98% experiencing costly neuropsychiatric symptoms (NPS) such as apathy and agitation. To address this critical health challenge, SingFit STUDIO–a therapeutic music mHealth app–was developed to increase accessibility to music interventions clinically shown to ameliorate neuropsychiatric symptoms and enhance well-being in persons with dementia (PWD). As part of a multiple-method quality improvement initiative, a series of focus groups were conducted with caregivers and rehabilitation therapists to refine the app’s user experiences and interface (UX/UI) design (n = 26). The focus group participants indicated the importance of a tool to help connect more with their loved one/client to improve quality of life and therapeutic outcomes. Regarding the SingFit platform, they reported that it was very easy to navigate, organized, and the information was relatively easy to understand. However, the participants rated the visual design as neutral, with the need for a more attractive color scheme and motifs. Feedback from the focus groups was analyzed and implemented as appropriate to improve overall user experience and acceptance. Since the conclusion of the focus group discussions, several modifications were made, including the addition of detailed information regarding novel features (e.g., song player) and the improvement in text box colors. In conclusion, this project aimed to incorporate qualitative focus group feedback to improve usability through enhanced user experience.

Psychological Effects of Early Diagnosis: Coping with Alzheimer’s disease and Other Dementias

The major aim of this study was to extensively assess the psychological effect of an early diagnosis of dementia on patients and the efficacy of various psychological interventions in improving emotional resilience among dementia patients and caregivers. For this purpose, a quantitative research design was used, whereby data were carefully collected from a large sample of 200 participants from different parts of Pakistan through a self-report questionnaire in the Likert scale format. The results of this extensive analysis identified that an early diagnosis of dementia does not prove to have a significant relationship with increased psychological distress among diagnosed individuals. However, high positive correlations were identified between coping strategies employed, support systems used, and the overall psychological well-being of the participants, thus indicating the imperative role these factors play in promoting emotional resilience. Further, the results of the ANOVA analysis identified a statistically significant difference in levels of psychological distress among participants receiving psychological interventions, thus effectively depicting the imperative role of counseling and therapy in the management of emotional issues among these individuals. Guided by these findings, the study recommends the imperative integration of mental health professionals within dementia care teams and advocates the initiation of public awareness campaigns for the removal of the stigma of dementia. The implications of these findings are vast, as they have important considerations for healthcare policy and the planning of future dementia care approaches, especially in developing nations such as Pakistan.

Acceptance of Artificial Intelligence Among Dementia Caregivers in Hospice: Preliminary Qualitative Findings

Acceptance of Artificial Intelligence Among Dementia Caregivers in Hospice: Preliminary Qualitative Findings

Exploring the Latino Experience and Needs in Dementia Caregiving

Exploring the Latino Experience and Needs in Dementia Caregiving

Childhood Abuse, Perceived Burden May Drive Suicide Risk of Dementia Caregivers

Childhood Abuse, Perceived Burden May Drive Suicide Risk of Dementia Caregivers

Adaptive Grief in Bereaved Dementia Caregivers: An Evolutionary Concept Analysis.

Bereaved dementia caregivers face unique challenges in navigating grief, yet research on dementia-specific adaptive grieving remains limited. Expanding on a prior scoping review, this concept analysis clarifies the theoretical construct of adaptive grief among bereaved dementia caregivers using Rodgers' evolutionary approach, which views concepts as dynamic and evolving. A review of 11 data sources (2013-2024) across nursing, sociology, medicine, and psychology identified three key attributes of dementia-specific adaptive grief: (1) rebuilding purpose: reconnecting with interests and community on one's own terms, (2) integrating change: blending past, present, and future experiences to regain direction, and (3) growing toward potential: pursuing self-defined goals and personal development. By defining dementia-specific adaptive grief, this concept analysis provides healthcare professionals with a clearer framework to recognize its evolving nature and distinguish it from maladaptive grief. It also emphasizes the need for longitudinal and culturally diverse research to inform tailored interventions that better support bereaved dementia caregivers.

A Model for Dynamics in Caregivers' Personal Support Networks During the Pandemic

ABSTRACTCOVID‐19 public health measures significantly disrupted personal support relationships among community‐dwelling family dementia caregivers. In this research, a personal network analysis was carried out to understand the dynamics in the personal support relationships of caregivers caring for persons living with dementia (PLwD) during the pandemic. The analysis focuses on variables comprising the caregivers' personal network, attributes of their alters, and the functional content in social support, as well as changes therein, before and during the pandemic. A total of 78 caregivers took part in the study, leading to an extensive analysis of 658 caregivers' personal relationships. Bivariate and multivariate regression analyses were performed to identify the characteristics of personal relationships associated with changes in the support received. The variables influencing changes were the type of tie with the caregiver and the type of support provided. The type of tie that presented the greatest positive change in support was that of caregivers' partners. In contrast, that of caregivers and health and social professionals presented the most significant negative change. Finally, the most positive change was observed in relationships that provided both emotional and informational support, whereas the least positive change occurred in relationships that offered instrumental support.

Cultural variability in dementia caregiver motivations: Unraveling unique and common drivers.

Introduction: In the Netherlands, approximately 800,000 individuals act as informal caregivers for people with dementia. Current policies prioritize care within the home setting, often relying on informal caregivers for support, assisted by care professionals. Given the wide ethnocultural diversity among dementia caregivers in the Netherlands, it is crucial to understand how these cultural differences influence caregiving. Given the emphasis on researching barriers to providing care in literature, this study specifically focused on motivators and facilitators to providing care. Methods: We conducted semi-structured interviews, both with caregivers of native Dutch patients (n = 11) and caregivers of patients with a migration background (n = 9), who all provided care at home for patients with dementia. Data was collected using an interview guide and open, axial and selective coding were used to analyze the transcripts of the interviews in Atlas.ti. Results: Four themes were identified. First, culturally shared motivators to providing care emerged, such as having a unique bond with the person with dementia and themes of reciprocity. Second, culture specific perspectives were identified, with Dutch caregivers often spontaneously reporting considering professional care, while culturally diverse caregivers stressed the available network of informal caregivers and their ability to persevere. Third, personal philosophies on life were a driver to provide care for caregivers of native Dutch patients, while religion mainly served as a source of strength in continuing to provide care in the culturally diverse group. Lastly, adult child caregivers benefit from supportive home environments and from using structure and routine in providing care. Discussion: Our findings show that the decision to provide care often seems driven by reciprocity and the prior quality of the relationship with the person with dementia, contrasting with previous work suggesting that religion is a main reason to provide care. Several recommendations are made how care professionals can take these factors into consideration when assisting caregivers.

"But Then They Don't Use the Same Money to Give Us Services": Attitudes and Perspectives on Dementia Care Community-Based Research in Hispanic Communities.

Core cultural values, along with commonly held beliefs about dementia, influence the caregiving roles assumed by Hispanic/Latino caregivers. Further, cultural values inform the utilization of available supportive programs and may influence participation in community-based dementia-support interventions. This paper discusses attitudes and perspectives on participating in community-based dementia-support interventions using a focus group methodology of Hispanic/Latino staff (n = 5). Findings from longitudinal focus groups (n = 3) with Hispanic/Latino staff, serving predominantly Hispanic/Latino populations, are presented. Findings highlight the value of research funding to support immediate care-related needs over future-focused research. They also emphasize the importance of culturally appropriate terminology and the centrality of cultural values that align with dementia-support research to effectively engage Hispanic/Latino populations. As supportive interventions for dementia caregivers are developed and implemented in real-world settings, including and aligning with cultural elements (i.e., family-oriented, family relationships) may encourage greater participation of Hispanic/Latino caregivers in research.

Financial Toxicity in Dementia Caregiving: Sociodemographic Predictors in a U.S. Nationally Representative Survey.

"Financial toxicity" describes the negative effects of medical expenses on financial security and health-related quality of life. Beyond dementia, financial toxicity is used to address the financial and health consequences of illness. Here, we utilize the COmprehensive Score for financial Toxicity (COST) to examine the experience of financial toxicity in dementia caregiving. We conducted a nationally representative survey of 317 dementia caregivers. Financial toxicity was defined as COST<26 and categorized as mild (COST ≥14 and <26), moderate (COST >0 and <14), or severe (COST = 0). Nested multivariable regression examined potential predictors of financial toxicity. Mediation analyses were performed to assess whether the influence of basic caregiver demographic predictors was mediated by care recipient clinical characteristics, caregiver socioeconomic demographics, or relational characteristics. 52.7% of dementia caregivers in the United States experience financial toxicity. Of those, 73.1% endure mild, 25.7% moderate, and 1.2% severe toxicity. 69.5% of Black, 54.1% of Hispanic, and 42.3% of White caregivers report financial toxicity, with prevalence significantly higher in Black caregivers compared to White caregivers (p = .017). Older caregiver age was associated with less financial toxicity (p = .024). Caregiver employment status mediated this effect, with retirement associated with less financial toxicity (p < .001) and unemployment associated with greater financial toxicity (p < .001). Most dementia caregivers in the United States experience financial toxicity, with Black caregivers bearing the highest risk. Older caregiver age protects against financial toxicity, reflecting the relationship between age and employment status.

Using C4.5 Algorithm to Gain Insights on Stakeholder Engagement and Use of Artificial Intelligence on Social Media in Dementia Caregiving Disparity Research.

We applied machine learning techniques to build models that predict perceived risks and benefits of using artificial intelligence (AI) algorithms to recruit African American informal caregivers for clinical trials and general health disparity research via social media platforms. In a U.S. sample of 572 family caregivers of a person with Alzheimer's disease and related dementias (ADRD), our application of the J48 algorithm (C4.5) revealed an interesting trend. African American family members of a person with ADRD were more likely to see the benefits of using AI on social media to ease the burden of recruitment, regardless of age, ethnicity, gender, and level of education. However, white family caregivers, particularly those aged 25-34 with graduate degrees, were more cautious and prone to perceive risks of using AI on social media for recruitment in research. This caution underscores the need for further research and understanding in this area.

Applying Data Mining to Predict Perceived Benefits Risks of Robotics at Home for Dementia Caregiving Among African American Families.

We used data mining to predict the attitudes of 527 caregivers towards the pros and cons of using robotics and artificial intelligence (AI) for dementia care in African American families, with a focus on family-level factors. African American family caregivers would prefer using AI home attendant for caregiving, even though there are associated costs, and see the benefits of using AI robots to improve family dynamics, despite the need for the AI to collect sensitive data. In contrast, white family caregivers aged 25-34 are more likely to perceive the risks of using AI robots for this purpose. The proposed AI smart home system evaluates care quality and assists families in nursing home decisions. However, specific groups are hesitant to embrace its benefits. This highlights the need for in-depth research to address concerns and communicate potential advantages effectively.

Loneliness among dementia caregivers: evaluation of the psychometric properties and cutoff score of the Three-item UCLA Loneliness Scale.

Dementia is a chronic progressive syndrome, with an entire loss of function in the late stages. The care of this demanding condition is primarily provided by family members, who often suffer from chronic burnout, distress, and loneliness. This instrumental study aimed to examine the factor structure, reliability, convergent validity, criterion validity, and cutoff scores of a short loneliness measure: the Three-Item version of the University of California, Los Angeles, Loneliness Scale (UCLALS3) in a convenience sample of dementia family caregivers (N = 571, mean age = 53 ±12 years, 81.6% females). Exploratory and confirmatory factor analyses were used to examine the structure of the UCLALS3 while receiver-operating characteristic (ROC) curve, including caregiving burden and emotional distress as outcomes, was used to examine its cutoff. One factor accounted for 79.0% of the variance in the UCLALS3; it was perfectly invariant across genders but variant at the metric level across countries. The scale had adequate internal consistency (alpha = 0.87), high item-total correlations (0.69 - 0.79), reduced alpha if item deleted (0.77 - 0.86), and strong positive correlations with caregiving burden and psychological distress scores (r = 0.57 & 0.74, p values = 0.01). Percentile scores and the ROC curve suggested two cutoffs (≥6 and ≥6.5), which classified 59.3 and 59.4% of the participants as having higher levels of loneliness-comparable to global levels of loneliness among informal caregivers. The Mann-Whitney test revealed significantly high levels of caregiving burden and distress in caregivers scoring ≥6.5 on the UCLALS3. The UCLALS3 is a valid short scale; its cutoff ≥6.5 may flag major clinically relevant symptoms in dementia caregivers, highlighting the need for tailored interventions that boost caregivers' individual perception of social relationships. More investigations are needed to confirm UCLALS3 invariance across countries.

Identifying Unmet Needs of Informal Dementia Caregivers in Clinical Practice: User-Centered Development of a Digital Assessment Tool.

Despite the increasing interventions to support family caregivers of people with dementia, service planning and delivery is still not effective. Our study aimed to develop a digitally-supported needs assessment tool for family caregivers of people with dementia that is feasible, time-efficient, understood by users, and can be self-completed in the primary care setting. The development of the unmet needs assessment tool was part of a cluster-randomized controlled trial examining the effectiveness of a digitally supported care management programme to reduce unmet needs of family caregivers of people with dementia (GAIN [Gesund Angehörige Pflegen]) and was conducted in 3 phases. Using an iterative participatory approach with informal caregivers, health care professionals including general practitioners, neurologists, psychologists, psychiatrists, nurses, and Alzheimer Society representatives, we developed a digital self-completion unmet needs assessment tool focusing on informal caregivers' biopsychosocial health und quality of life in connection to their caregiver responsibilities. Data were collected through group discussions, written feedback, protocols, think-aloud protocols, and interviews, and analyzed thematically. Data from 27 caregivers, including caregivers of people with dementia (n=18), health care professionals (n=7), and Alzheimer Society representatives (n=2) were collected. Thematic analysis identified 2 main themes: content of the assessment tool and usability and handling of the digital tablet-based assessment tool. The feedback provided by the stakeholders led to new aspects and changes to make the tool comprehensive, easy to read, and easy to handle. The overall mean completion time was reduced from the initial 37 minutes to 18 minutes, which renders the assessment tool fit to be self-completed in waiting rooms of primary care practices or other settings. The input of the 3 stakeholder groups has supported the development of the assessment tool ensuring that all aspects considered important were covered and understood and the completion of the assessment procedure was time-efficient and practically feasible. Further validation of the assessment tool will be performed with the data generated as part of the GAIN trial.

Between empowerment, patronization, and surveillance. A semi-structured interview study with persons with dementia and family caregivers on the empowering opportunities and perils of intelligent assistive technologies

BackgroundIntelligent assistive technology (IAT) can contribute to the empowerment of persons with dementia by increasing independence, strengthening social participation, and improving quality of life. IAT could, however, also create new dependencies, reinforce power asymmetries, perpetuate stigmatization, and invade the privacy of persons living with dementia. To fulfill the empowering promise of new technologies and design a user-friendly IAT, users'perspectives, needs, capabilities and interests should be incorporated into IAT development and implementation from an early stage. Yet, the development and ethical assessment of IAT still tends to neglect the perspectives of potential user groups. This study explores how persons with dementia and their caregivers assess the empowering potential, opportunities, and risks of IAT.MethodsWe conducted a qualitative content analysis of 27 semi-structured interviews with persons with dementia (12) and their caregivers (15). Three technologies (GPS bracelet, dressing technology, and emotion recognition technology) were presented in the interviews using fictional case vignettes.ResultsPersons with dementia and their caregivers generally believe that IAT can potentially empower persons with dementia by improving their independence in performing daily tasks, supporting their independent mobility, increasing their physical and emotional sense of safety, and improving their social participation. The risks they identify include violations of privacy, patronization through technology, lack of user specificity, and insufficient everyday usability. Technologies are viewed very differently depending on the context, purpose of use, and user group.ConclusionIATs seem to have the potential to empower persons with dementia, but risks and benefits are perceived differently by the interviewees. The technology’s usefulness depends on adapting to users' needs, capabilities, and interests. Future studies using a participatory approach that includes user preferences from the outset could lead to more user-centered technologies that promote the empowerment of persons with dementia.

The Making of a Good Carer: Dementia and Family Caregiving in an Era of Refamilization and Responsibilization in the Nordic Context.

A growing number of older people with dementia are continuing to live in their own homes for prolonged periods, leading to a growing number of family carers. An aging population and neoliberal austerity politics are contributing to increased family-provided care instead of formal care services. This is particularly noticeable in the Nordic context, where the welfare state has traditionally been based on universalizing policies designed to mitigate inequalities. The aim of this article is to explore societal expectations of family caregivers and the rhetoric surrounding family caregiving through analyzing a Swedish handbook entitled Dementia for Family Carers: A Handbook from the Swedish Dementia Centre. The textual analysis identifies the various responsibilities expected of family caregivers and illustrates how this responsibility can best be designed. The responsibility of family carers is perceived as natural and self-evident, especially in the context of spouses or partners. In such relationships, when caring for someone with dementia, the expectation is that the carer will transition into a caregiving role rather than continuing to be a life partner. Family caregivers are also expected to be central coordinators of formal and informal care. Furthermore, the responsibility includes the carers' own self-care and ensuring they have the necessary knowledge and support. In tandem with the refamilization process, in which more family carers are providing care for relatives, idealizing and norm-making processes of family caregiving are emerging. This responsibilization process is crafting conceptions of the good carer, one who is responsible for relatives and formal care, while also prioritizing their own well-being.

Convening Hispanic/Latino Caregiving Advisors for Inclusive Research in Dementia Palliative Care.

Background: Dementia clinical trials often fail to include diverse and historically minoritized groups. Objective: We sought to adapt the Alzheimer's Disease and Related Dementias-Palliative Care (ADRD-PC) clinical trial to improve enrollment and address the cultural needs of people with late-stage ADRD who identify as Hispanic or Latino and their family caregivers. Design: Bilingual, bicultural research team members adapted study materials and processes using the Cultural Adaptation Process Model. Investigators and research staff held three meetings with eight Hispanic/Latino advisors-seven dementia caregivers and one health care professional. The first two meetings informed linguistic and cultural adaptation of study materials and processes. After piloting the adapted materials with Hispanic/Latino patient-caregiver dyads in the ADRD-PC study, the third meeting focused on refining protocols for recruitment. Results: Key reflections from advisor meetings guided cultural adaptation: lived experiences on dementia caregiving; patient, caregiver, and clinician interactions in the health care system; and limited knowledge and misconceptions of palliative care. Adaptations to the ADRD-PC study materials included specific consideration of preferred language, word choices (i.e., "palliative care" and "caregiver"), and recruitment considerations related to potential barriers to palliative care or research in general. Conclusions: Cultural adaptation of the ADRD-PC dementia palliative care clinical trial protocol depended on participatory methods and collaboration between Hispanic/Latino caregiver advisors and researchers, including bilingual, bicultural team members. Comparable methods may inform future culturally inclusive approaches to clinical research and thus improve representation of minoritized groups in dementia care research.

Does a social care assistance intervention reduce unmet resource needs among dementia caregivers?

Does a social care assistance intervention reduce unmet resource needs among dementia caregivers?

The Impact of Behavioral and Psychological Symptoms of Dementia on Mental Health, Sleep Quality, and Caregiver's Burden.

This study examined sleep quality and potential psychological symptoms in primary caregivers of patients with varying dementia severity, considering the presence or absence of significant Behavioral and Psychological Symptoms of Dementia (BPSD). A total of 280 dementia patients (130 with BPSD, 150 without) and their caregivers were included. Patients with Clinical Dementia Rating scores from 0.5 to 2 were assessed. Caregivers' psychological symptoms, sleep quality, and burden were evaluated using the Symptom Checklist-90-Revised, Pittsburgh Sleep Quality Index, and Caregiver Burden Inventory. Caregivers of patients with BPSD reported significantly greater psychological distress, burden, and poorer sleep quality than those caring for patients without BPSD. Their distress spanned multiple symptom dimensions, including depression and anxiety. Somatization and phobic anxiety were also more pronounced in caregivers of mild and moderate dementia with BPSD. Among caregivers of patients with BPSD, those of individuals with moderate dementia experienced the highest distress, burden, and poorest sleep quality compared to those with very mild dementia. BPSD is a major contributor to greater caregiver distress, sleep disturbances, and burden, regardless of dementia severity, or duration alone. These findings highlight the need for targeted interventions to manage BPSD, which may help alleviate caregiver psychological distress and improve sleep quality.

A social care assistance intervention for dementia caregivers reduces emergency care utilization

A social care assistance intervention for dementia caregivers reduces emergency care utilization