Caregiving Strategies Research Articles

Coping strategies of family caregivers in spinal cord injury: a qualitative study

Purpose To identify the coping strategies used by family caregivers of persons with spinal cord injury (SCI) in Switzerland in order to develop tailored support programs. Materials and methods Purposive sample of >18 years participants, speaking an official Swiss language fluently, being family caregivers of persons with SCI for at least 4 years, and perceiving either a high or low burden in relation to caregiving. Data were collected through face-to-face semi-structured interviews (N = 22). Thematic analysis was performed. Results Four main coping strategies were identified: reappraisal, active acceptance, setting limits to the caregiver role, and seeking support. These strategies can be used one at a time or combined, and at different times of a caregiver pathway. Our analysis highlighted that caregivers need skills to implement these strategies (e.g., self-evaluation skills). Conclusions Caregivers of persons with SCI develop cognitive coping strategies to make sense of the situation and establish a “new normal” and problem-focused coping strategies to deal with their new tasks and role. These strategies do not seem to be typical only of SCI caregivers. Hence, interventions that worked for caregivers in other fields could be adapted. Rehabilitation centers should systematically integrate programs targeted to caregivers into their offerings. IMPLICATIONS FOR REHABILITATION Healthcare systems need to develop educational and support measures for both persons with a health condition and their caregivers. Caregivers should become long-term partners in rehabilitation and a regular and structured needs assessment should be offered. Interventions that worked for caregivers in other fields can be adapted to support also caregivers in SCI. Educational and support programs dedicated to caregivers should teach not only how to perform caregiving tasks but also how to balance between responding to the care recipient’s needs and their own needs.

A Pilot Study on the Efficacy of Stress Relief Programs for Family Caregivers of Older People with Dementia

The aim of this study was to evaluate the effects of stress-relief programs on positive aspects of caregiving and depression among caregivers of older people with dementia. A quasi-experimental design was employed. Participants in the experimental group received a 8-week period and 120 minutes each session cognitive-behavioral therapy. Participants in the control group received standard health education. Stress relief programs may alleviate depression and increase positive aspects of caregiving among family caregivers of older people with dementia. These findings will help health professionals to implement stress-relief strategies for family caregivers of older people with dementia, or to use those strategies to increase positive aspects of caregiving, or to alleviate depression in caregivers.

Decision Regret among Informal Caregivers Making Housing Decisions for Older Adults with Cognitive Impairment: A Cross-sectional Analysis.

Background. Informal caregivers are regularly faced with difficult housing decisions for older adults with cognitive impairment. They often regret the decision they made. We aimed to identify factors associated with decision regret among informal caregivers engaging in housing decisions for cognitively impaired older adults. Methods. We performed a secondary analysis of cross-sectional data collected from a cluster-randomized trial. Eligible participants were informal caregivers involved in making housing decisions for cognitively impaired older adults. Decision regret was assessed after caregivers' enrollment in the study using the Decision Regret Scale (DRS), scored from 0 to 100. We used a conceptual framework of potential predictors of regret to identify independent variables. We performed multilevel analyses using a mixed linear model by estimating fixed effects (β) and 95% confidence intervals (CIs). Results. The mean (SD) DRS score of 296 informal caregivers (mean [SD] age, 62 [12] years) was 12.4 (18.4). Factors associated with less decision regret were having a college degree compared to primary education (β [95% CI]: -11.14 [-18.36, -3.92]), being married compared to being single (-5.60 [-10.05, -1.15]), informal caregivers' perception that a joint process occurred (-0.14 [-0.25, -0.02]), and older adults' not having a specific housing preference compared to preferring to stay at home (-4.13 [-7.40, -0.86]). Factors associated with more decision regret were being retired compared to being a homemaker (7.74 [1.32, 14.16]), higher burden of care (0.14 [0.05, 0.22]), and higher decisional conflict (0.51 [0.34, 0.67]). Limitations. Our analysis may not illustrate all predictors of decision regret among informal caregivers. Conclusions. Our findings will allow risk-mitigation strategies for informal caregivers at risk of experiencing regret.

The Double-Burden Effect: Does the Combination of Informal Care and Work Cause Adverse Health Outcomes Among Females in China?

Objective: This study investigates the impact of informal care and work stress on women's health and further disentangles this effect through intensity and channel analysis. Method: This research uses the 2000-2015 China Health and Nutrition Survey and employs the propensity score matching model with fixed effects. Results: The care and work burden significantly increases the probability of women suffering from chronic diseases, being underweight or overweight, and self-reporting poor health by 0.63%, 1.69%, and 2.35%, respectively. This double-burden effect is exacerbated as the care and work hours increase. Women who care for more than 20 hr and work for more than 50 hr per week experience the most serious health decline. We further find that the double burden leads to health deterioration through channels of reduced exercise and increased psychological stress. Discussion: This study provides a reliable decision-making basis for policy makers to formulate strategies for informal caregivers in China.

Latino Caregivers’ Interactions With Their Children With Language Delays: A Comparison Study

Evidence-based treatments for young children with developmental language delays include caregiver-implemented naturalistic interventions. However, there is little research on culturally appropriate interventions for Spanish-speaking caregivers from low–socioeconomic status (SES) households and their young children with identified language delays. We compared interaction strategies of Latino Spanish-speaking caregivers from low-SES backgrounds and non-Latino English-speaking caregivers from high-SES backgrounds with their children with language delays. Caregivers’ interactions were coded for (a) interaction characteristics, (b) use of naturalistic language support strategies, and (c) linguistic input. Results indicated Spanish-speaking Latino caregivers from low-SES backgrounds used a more directive, responsive, and warm interaction style than non-Latino caregivers. Non-Latino, English-speaking caregivers from high-SES backgrounds used more cognitively stimulating strategies, spent more time observing and narrating play, and used longer utterances and more lexical diversity. Findings provide directions for future research and guidance for clinicians working with Latino families from low-SES households.

Informal caregivers\u2019 views on the quality of healthcare services provided to older patients aged 80 or more in the hospital and 30\u2009days after discharge

BackgroundIn the European Union (EU), informal caregivers provide 60% of all care. Informal caregiving ranges from assistance with daily activities and provision of direct care to helping care recipients to navigate within complex healthcare and social services systems. While recent caregiver surveys document the impact of informal caregivers, systematic reviews show that they have unmet needs.Because of the political desire to reduce the length of hospital stays, older patients are discharged from the hospital ‘quicker and sicker’ than before. The transition between different levels of the healthcare system and the period after hospital discharge is critical for elderly patients.Caregivers’ perspectives on the quality of older patients’ care journeys between levels of the healthcare system may provide valuable information for healthcare providers and policymakers. This study aims to explore older patient’s informal caregivers’ views on healthcare quality in the hospital and in the first 30 days after hospitalisation.MethodWe conducted semi-structured individual interviews with 12 participants to explore and describe informal caregivers’ subjective experiences of providing care to older relatives. The interviews were then transcribed and analysed thematically.ResultsThe analysis yielded the overarching theme ‘Informal caregivers – a health service alliance – quality contributor’, which was divided into four main themes: ‘Fast in, fast out’, ‘Scant information’, ‘Disclaimer of responsibility’ and ‘A struggle to secure professional care’. The healthcare system seemed to pay little attention to ensuring mutual understandings between those involved in discharge, treatment and coordination. The participants experienced that the healthcare providers’ main focus was on the patients’ diseases, although the health services are supposed to view patients holistically.ConclusionBased on the information given by informal caregivers, health services must take into account each person’s needs and preferences. To deliver quality healthcare, better coordination between inter-professional care teams and the persons they serve is necessary. Health professionals must strengthen the involvement of caregivers in transitions between care and healthcare. Future work should evaluate targeted strategies for formal caregivers to cooperate, support and empower family members as informal caregivers.

Description of the Lesch-Nyhan neurobehavioral disorder and its management through participant observation of three young individuals.

BackgroundLesch‐Nyhan disease (LND; OMIM 300322), caused by virtually absent hypoxanthine‐guanine phosphoribosyltransferase activity, in its classic form is characterised by hyperuricemia, variable cognitive impairment, severe motor disorder and a characteristic behavioural disorder (Lesch‐Nyhan Behavior, LNB), typically described as self‐injurious behavior (SIB) and “self‐mutilation.” This work focuses on the latter aspect with the aim of exploring and broadening it.MethodsThe participant observation method was used to follow three children diagnosed with LND individually, in different contexts of daily life, always with their usual restraints and in the presence of a caregiver.Results60 observational sessions, for over 90 total hours, led to the description of 292 LNBs, interfering with different aspects of life. Harmful behaviors could be classified into different categories, based on the life aspect affected and type of harm provoked. Antecedent conditions, consequent reactions, and emotions of the child and different management of the caregiver were recorded for each LNB. We confirmed that patients normally feel pain. Most common emotional reactions are regret and shock. As a consequence of a LNB, increased anxiety was always recorded, never satisfaction. Caregiver strategies most commonly used to stop the LNB and preventing recurrences are reported and discussed.ConclusionsWe are proposing a wider LNB description, beyond the classical Self‐injurious behavior (SIB), stating that it is widespread and pervasive, involving every facet of the patients' life. Caregivers and operators should be aware that they might face different LNBs, and have to recognize them to find the better way to manage patients.

Highly sensitive persons, caregiving strategies and humour: the case of Italian and Israeli medical clowns

The medical clown is a healthcare practitioner whose character is strictly associated with the performer’s own personality. In this study, the relationships between level of sensory processing sensitivity (SPS), caregiving strategies and humour in Italian and Israeli clowns were compared. Participants were 159 medical clowns (97 Italian and 62 Israeli), ranging from 22 to 74 years of age, who completed a demographic questionnaire, the self-reported Highly Sensitive Person Scale, the Caregiving Strategies Scale and the BenCor. Results showed that higher SPS was related to higher hyperactivation and deactivation, and that hyperactivation was related to lower benevolent humour and greater corrective humour. Hyperactivation negatively predicts benevolent humour but positively predicts corrective humour, beyond the effect of SPS. Deactivation had no relationship to either benevolent or corrective humour. The results are also discussed in reference to differences between the two groups and to previous studies conducted with general populations.

Care demands experienced by family caregivers of children with Primary Immunodeficiency.

to understand the experiences of family caregivers of children with Primary Immunodeficiency in view of care demands. a qualitative research. Data collection was subsidized by an open interview with five family caregivers, and the data were analyzed using the Bardin Content Analysis technique, thematic modality. The Callista Roy's Adaptation Model of Nursing was used to interpret the data. from participants' reports, the following categories emerged: Maternity: facing adversity; Remodeling of daily life; The Social Support Network resource. family caregivers experience several feelings such as anguish and low self-esteem due to the fear of losing their child and the routine of illnesses and hospitalizations, in addition to needs that are often not reached due to incompatibility with the family budget. The Social Support Network is strengthened for most caregivers, playing an essential role as a coping strategy for caregivers.

The Economic Cost and Burden of Informal Caregiving for the Inpatient: The Case of Lemlem Karl Hospital, Maichew, Ethiopia

The objective of this study is to present new empirical findings about the economics of informally supplied health care with special emphasis on the labor market-related opportunity cost and to measure the burden of informal caregiving for the inpatient at Lemlem Karl hospital, Maichew, Ethiopia. The study employs ordinary list square and ordered logit method of regression. In addition, the study also employed measurement mechanisms like; opportunity cost, proxy good and Zarit Burden Scale. The mean time spent on informal caregiving was 73.18 hours/4.1days and the mean cost of informal caregiving for the inpatient at Lemlem Care Hospital by using the opportunity cost and proxy good valuation method is 689.56birr (23.74$) and 724.653 birr (24.5$) per 4.1 days respectively. The study also measures caregiver’s burden level by using Zarit Burden Scale and the result depict that of the total respondents 51 (38.06%) affected by moderate caregiving burden and followed by 41 (30.60%) of the respondents with little caregiving burden. To reduce the cost and burden of principal informal caregivers and to fill this gap the following policy recommendations are made based on the findings of the study and the experience of the rest of the world. Enable informal caregivers to balance personal and social life with care responsibilities through respite care, develop and deploy a national caregiving strategy and the strategy should at a minimum include three policies; (a) Policy Related to Workplace Accommodation; (b) Financial Assistance policy; (c) Investment in informal caregiving research and development related projects.

The Effect of a Nurse-Led Cognitive Behavioral Protocol on Depressive Symptoms and Coping Strategies of Dementia Caregivers.

Family caregivers of patients with dementia (PWD) often experience depressive symptoms and use poor coping strategies. Cognitive behavioral interventions may enhance positive appraisals of caregiving-related issues and the utilization of active coping strategies among caregivers, which may help prevent caregiver depression. However, there is a shortage of primary, community-based mental health services in China, and little research has been conducted on the effect of nurse-led mental health programs in this population. This study explored the effect of a nurse-led cognitive behavioral intervention on depressive symptoms and coping strategies among family caregivers of PWD in China. This randomized controlled trial used data from a sample of 112 caregivers screened from 276 potential participants in a city in southeastern China. The sample was randomly assigned to an intervention group (n = 56) and a control group (n = 56). The intervention group received five monthly in-home, nurse-led cognitive behavioral sessions and telephone consultations after each session. The control group received five monthly, short, general conversations with nurse interventionists at the participants' homes, in the hospital, or via telephone. Depressive symptoms, coping strategies, and the demographics of caregiving dyads were collected at Time 1 (baseline), Time 2 (the end of the 5-month intervention), and Time 3 (2-month follow-up). IBM SPSS Statistics Version 19.0 was used for data analysis. Eighty-two participants (intervention group: n = 47, control group: n = 35) completed the three evaluations. No significant group differences were found in baseline characteristics between the two groups. The general linear model repeated-measures analysis of variance indicated a significant difference in depressive symptoms and active coping between groups over time, with p < .001 for the interaction between depressive symptoms and groups and p < .01 for the interaction between active coping and groups. A similar result did not occur for passive coping. The t tests further supported a significant interventional effect on participants' depressive symptoms and active coping. This nurse-led cognitive behavioral intervention was effective in decreasing depressive symptoms and improving active coping among study participants. The findings suggest the improvement of mental health services and social policies in China to support family caregivers of PWD.

Informal caregiving for dementia patients: the contribution of patient characteristics and behaviours to caregiver burden.

The burden often associated with informal caregiving for patients with dementia is associated with negative effects on health, both physiologically and in terms of caregiver cognition. There is wide variation in the level of burden experienced by dementia caregivers. To better understand caregiver burden, it is thus important to understand the factors associated with level of burden. In the current study, we collected carer burden and putative associated factors at baseline, 6 and 12 months. Hierarchical regression was used to assess the impact of these factors on caregiver burden. We assessed self-reported carer burden, patient behavioural and safety issues, and level of difficulty associated with providing assistance with activities of daily living (ADL). Patients' age was also recorded, and trained nurses assessed patient cognitive performance using the quick mild cognitive impairment screen. At baseline, patients' age, cognition and ADLs were associated with burden, and safety and challenging behaviour were both significantly associated with burden independent of the other factors. Change in burden was associated with change in carer-reported safety at 6-month follow-up, and with change in safety and change in carer-reported challenging behaviours at 12-month follow-up. Safety issues and challenging behaviours are associated with carer burden, even after accounting for cognitive and functional impairment in the person with dementia. As dementia progresses, monitoring these factors may help to inform stress-management strategies for caregivers.

CARE DEPENDENCY IN OLD AGE IN MEXICO: SITUATIONAL ANALYSIS, IMPLICATIONS, AND RECOMMENDATIONS

The demographic transition, population aging, and the epidemiological transition in Mexico have modified the burden of the disease profile, and impose important economic, social, and health care challenges, particularly old-age and disability-related care dependency. We describe old age health and dependency conditions, and analyze the supply of services to dependent population, including aging and disability norms and policies, the role of the government and the private sector (profit & non-profit) in the provision of related services. Based on the analysis, it is clear that public strategies for care dependency are practically non-existent and that policies aimed at these populations focus on guaranteeing access to basic health services, an economic income, and social integration. Also, there are no support strategies for family caregivers who currently carry most of the care work. Care dependency strategies to support those who need them as well as those who currently provide them are urgently needed.

INCLUDING FAMILY CAREGIVERS IN SERIOUSLY ILL VETERANS' CARE: A MIXED-METHODS STUDY

Family caregivers often serve as unpaid members of the home- and community-based care workforce for individuals with serious illness; as key partners in the home-clinic continuum, they should be included in healthcare teams. Without formal recognition, inconsistent identification of caregivers will remain, engendering communication gaps between caregivers and providers and difficulty connecting with supportive services. The Campaign for Inclusive Care is an initiative within the Veterans Administration Health Care System to improve practices for including caregivers in treatment planning and decisions. We define inclusive care using literature review, provider interviews, and a caregiver survey. We found that inclusive care involves clear definition of caregiver role, system policies for inclusion, assessment of caregiver capacity, explicit involvement of caregivers, and mutuality in caregiver/provider communication. We recommend solutions based on the definition, informative for development of a national caregiver strategy, required by the 2018 Recognize, Assist, Include, Support, and Engage Family Caregivers Act.

THE IMPACT OF “TELE-SAVVY” ON THE CAREGIVING EXPERIENCE OF DEMENTIA FAMILY CAREGIVERS: QUALITATIVE FINDINGS

Tele-Savvy is a 3-arm randomized controlled trial (RCT) of a psychoeducation intervention that equips family caregivers of people living with dementia with the knowledge and skills they need to provide care to their person, while also caring for themselves. This RCT is currently underway, with cohorts rotating through over a period of 12 months. The purpose of this presentation is to describe the effectiveness of Tele-Savvy (active) versus Healthy Living Intervention (attention control) or usual care (wait-list) on the caregiving experience among dementia family caregivers. We conducted semi-structured interviews with 16 caregivers at the 6 month time point and after their initial participation in either the active, attention control, or usual care groups. Interviews elicited caregivers’ perceptions regarding the program’s influence on their caregiving experience. Caregivers who participated in Tele-Savvy reported positive experiences such as recognizing that their experience has become more pleasurable and happier. They also shared that the program expanded their knowledge and allowed them to become patient while implementing caregiving strategies learned. Majority of caregivers who participated in the Healthy Living program indicated that nothing changed related to their caregiving experience. Half of the caregivers in the usual care group, expressed frustration and unhappiness, while the others expressed no change in their caregiving experience. Results suggest that psychoeducation caregiver interventions are meaningful and can enact positive changes in their outlook on caregiving. Thus, results of this study may guide future policies and further development of caregiver programs and interventions.

Mobile Geriatric Teams - A Cost-Effective Way Of Improving Patient Safety And Reducing Traditional Healthcare Utilization Among The Frail Elderly? A Randomized Controlled Trial.

BackgroundDemographic changes combined with costly technological progress put a financial strain on the healthcare sector in the industrialized world. Hence, there is a constant need to develop new cost-effective treatment procedures in order to optimize the use of available resources. As a response, the concept of a Mobile Geriatric Team (MGT) has emerged not only nationally but also internationally during the last decade; however, scientific evaluation of this initiative has been very scarce. Thus, the objective of this study was to perform a mixed methods analysis, including a prospective, controlled and randomized quantitative evaluation, in combination with an interview-based qualitative assessment, to measure the effectiveness and user satisfaction of MGT.Materials and methodsCommunity-dwelling, frail elderly people were randomized to an intervention group (n=31, mean age 84) and a control group (n=31, mean age 86). A two-year retrospective quantitative data collection and a prospective one-year follow-up on healthcare utilization were combined with qualitative interviews. Non-parametric statistics and difference-in-difference (DiD) analyses were applied to the quantitative data. Qualitative data were analyzed using content analysis.ResultsNo significant group differences in healthcare utilization were found before inclusion. Post intervention, primary care contact (including MGTs) increased for the MGT group. Inpatient care decreased dramatically for both groups. Hence, the increase in primary care contact for MGT patients was not accompanied by a reduction in inpatient care compared to the control group. Utilization of non-primary care was lower (p< 0.01) post-intervention in both groups.ConclusionThere appears to be a “natural” variation in healthcare needs over time among frail elderly people. Hence, it is vital to perform open, controlled clinical studies in tandem with the implementation of new caregiving strategies. The MGT initiative was clearly appreciated but did not fully achieve the desired reduction in healthcare utilization in this study.Trial registrationRetrospectively registered 09/10/2018, ClinicalTrials.gov ID NCT03662945.

Ethnic identity in our global society: Supporting youth physical and mental health and adjustment

Ethnic identity development is a normative developmental process that youth experience in adolescence. Ethnicity refers to an individual's membership into a group with a common ancestry, including shared culture, place of origin, language, kinship, or values. Ethnic identity refers to one's identity or sense of self as a member of an ethnic group. Research evidence on ethnic identity in children and adolescents overwhelmingly points to its importance in supporting positive mental and physical health, academic, and social outcomes for youth. In this article, we describe the process of ethnic identity development and discuss strategies for caregivers, clinicians, and educators to support positive ethnic identity development in our youth.

Developing a Comprehensive Model for Improving Quality of Life in Individuals with Alzheimer Disease and Related Dementia and Their Informal Caregivers: Qualitative Study of AZL Forum Data

Background It is estimated that more than five million Americans are living with Alzheimer disease and related dementia (ADRD), and the population of people living with the disease is expected to triple by 2060. Most care for persons living with ADRD is provided by informal caregivers. However, current strategies to improve the quality of life for both people living with ADRD and their informal caregivers are not optimal, especially from a comprehensive approach. Social media and online forums have become increasingly popular tools for ADRD caregivers to manage the burden of caregiving. Objective This study was to 1) explore informal caregivers’ discussion topics by analyzing the caregiver online forum data, and 2) develop a comprehensive model based on their discussion topics, with the aim to improve quality of life for both persons living with ADRD and their informal caregivers. Methods Publicly available peer interactions of 4102 registered users, with 96% self-claimed as informal caregivers (67% as a child of a person with dementia, 13% as a partner/spouse, and 7% as a relative) on the Alzheimer’s Association ALZ Connected Caregivers Forum were extracted in January 2019 using computer programming. A total of 40,798 postings were collected. All authors agreed to use a triangular model to serve as the predetermined three major themes to categorize all codes. The three major themes were factors of caregivers, factors of individuals with ADRD, and factors of care context. Inductive coding was used to derive in vivo codes from the data, and the codes were further refined throughout the coding process. Two researchers independently coded postings until saturation was reached. Discrepancies were discussed among the two researchers to reach consensus. A third senior researcher’s opinion was referred to whenever necessary. Results For factors of caregivers, the most frequent subthemes were perceived caregiver burden, caregiver’s life balance, caregiving strategies, communication, expectations, personal health issues, poor relationship, and ineffective coping. Subthemes of factors of individuals with ADRD included changes in abilities and capacities, commodities, behaviors, health conditions, daily living function, disengagement, and ineffective coping. Lastly, for factors of care context, the most frequent themes were family support, financial support, informational support, professional support, length of care provided, living arrangement, activities and stimulation, patient health care coordination, unexpected situations, communication, and physical environment. One theme under one of the triangular factors may influence another theme under another triangular factor and vice versa. Conclusions By analyzing the discussions of informal caregivers on ALZ online forum, we found that taking care of a loved one with ADRD is challenging for informal caregivers. The challenges may affect the quality of life for both caregivers and the caregiver recipients; factors of care recipients, caregivers, and the care context interactively affect perceived challenges of caregivers. This study has identified a comprehensive model which may be used to help improve quality of life for both informal caregivers and people living with ADRD. Our next step is to use these manually determined codes to analyze all extracted postings via machine learning to improve this model.

Caregiver Strategy Use To Promote Their Child’s Participation in Home-Based Occupations Following Pediatric Critical Illness

Abstract Date Presented 04/06/19 Trends in participation-focused strategies used by caregivers of critically ill children who did and did not receive PICU rehabilitation services were identified. Strategies were coded as child focused or to an environmental chapter of the ICF-CY. Caregivers can identify participation-focused strategies, but may benefit from education by their rehabilitation team to develop a broader range of strategies to promote their child’s home participation. Primary Author and Speaker: Andrea Gurga Contributing Authors: Jessica Jarvis, Mary Khetani, Karen Choong

Lucidity in dementia: A perspective from the NIA

In this issue of Alzheimer's & Dementia, Mashour et al. propose the intriguing hypothesis that some manifestations of late-stage dementia are reversible, albeit transiently. Calling this phenomenon paradoxical lucidity, their paper follows a 2018 workshop sponsored by the National Institute on Aging that assessed the state of knowledge on lucidity in dementia and identified areas ripe for further study. The National Institute on Aging has since released two funding opportunity announcements (RFA-AG-20-016 and RFA-AG-20-017) to establish the building blocks of such a research program. The potential challenges of conducting such studies are matched by the potential opportunities to open a novel window onto our understanding of dementia. Initial findings from this research may eventually lead to studies that uncover novel mechanisms underlying cognitive decline, identify potential preventive or therapeutic approaches for individuals with dementia, offer more effective strategies for caregivers, and perhaps even expand our understanding of the nature of personhood and consciousness.