Caregivers Of Family Members Research Articles

Weiqu, structural injustice and caring for sick older people in rural Chinese families: An empirical ethical study.

This paper examines caregiving for sick older family members in the context of socio-economic transformations in rural China, combining empirical investigation with normative inquiry. The empirical part of this paper is based on a case study, taken from fieldwork in a rural Chinese hospital, of a son who took care of his hospitalized mother. This empirical study highlighted family members' weiqu (sense of unfairness)-a mental status from experiencing mistreatment and oppression in family care, yet with constrained power to explicitly protest or make care-related choices. Underpinning people's weiqu and constrained choice, as informed by the conception of structural injustice, is the impact of unjust social structures, organized by unfavourable norms, discriminatory social policies and institutions targeting rural populations. By restraining individual choices and capacities in supporting health care for aging populations, these unjust structures create additional difficulties for and discriminations against rural families and their older members. Some policy recommendations are proposed to mitigate structural injustice so as to empower families and promote care for older people in rural settings.

Gazing at Medusa: Alzheimer's dementia through the lenses of spirituality and religion.

Although religious and spiritual issues regarding Alzheimer’s Dementia (AD) were not thoroughly investigated in the past, this review presents the most recent findings that can provide some scientific evidence about the experience and clinical usage of religious and spiritual beliefs from the perspective of the diagnosed patient, the caregiver-family members, and the health professional. Majority of the papers reviewed (50 out of 51) identified a positive influence of religiousness and spirituality. Thus, this review examines through a detailed analysis the possible pathways of the influence of these perceptions in cognitive, emotional, and behavioral aspects of AD. Findings support the paramount importance of religion and spirituality in coping with the diagnosis of this specific type of dementia. Future experimental research should consider these observed benefits with caution and include them in everyday life.

We are in this Together: Retrospective Parentification, Sibling Relationships, and Self-Esteem

Parentification occurs when children provide caregiving for family members that typically exceeds their capacity and developmental stage. Parentification roles and responsibilities are often linked with deleterious outcomes, including robbing children of age-appropriate opportunities, activities, and support. However, in some circumstances, such as caring for a sibling vs. caring for a parent, parentification may engender feelings of self-efficacy, competence, and other positive outcomes. The primary objective of the current study was to explore the possible benefits of parentification. Using an understudied, international population, the current study tested the benefits of parentification in the context of the sibling relationship. Two research questions guided the study: to what extent are perceived benefits of parentification positively associated with self-esteem among a sample of Polish late adolescents? And to what extent does the quality of the sibling relationship mediate the association between perceived benefits of parentification and self-esteem? Results from the current sample showed the quality of sibling relationships partially mediated the relation between parentification and self-esteem. The findings underline the importance of assessing the quality of sibling relationships when an individual or family presenting for clinical services related to past and current family discord and dysfunction. Future research might consider other factors in the sibling relationship, such as personality, that could relate to positive outcomes from parentification.

Psychosocial Adjustment of In-Home Caregivers of Family Members with Dementia and Parkinson's Disease: A Comparative Study.

Neurodegenerative diseases such as Parkinson's and dementia are highly prevalent worldwide. People who suffer from these disorders often receive in-home care and assistance from family members, who must dedicate a considerable amount of time to the care recipient. The study of family caregivers' psychosocial adjustment to the degenerative processes of both conditions is of interest due to the implications for the quality of life of both the care receiver and the caregiver, as well as other family members. This study compares the psychosocial adjustment of family members who care for people with dementia and Parkinson's disease and identifies the main sociodemographic variables that affect the processes of adjustment to both conditions. To this end, the Psychosocial Adjustment to Illness Scale (PAIS-SR) and a sociodemographic form were administered to 157 family caregivers in Navarre, Spain. The results show that adjustment to the disease in family caregivers of people with Parkinson's disease and dementia is, in general, satisfactory and related to variables such as place of residence, income, and employment status. The illness itself (Parkinson's or dementia), however, is found to be the most influential variable in the level of psychosocial adjustment.

Self-Administered Acupressure for Caregivers of Older Family Members: A Randomized Controlled Trial.

To test whether self-administered acupressure reduces stress and stress-related symptoms in caregivers of older family members. In this randomized, assessor-blind, controlled trial, 207 participants were randomized (1:1) to an acupressure intervention or a wait-list control group. Community centers in Hong Kong, China. Primary caregivers of an older family member who screened positive for caregiver stress with symptoms of fatigue, insomnia, or depression. The 8-week intervention comprised four training sessions on self-administered acupressure, two follow-up sessions for learning reinforcement, and daily self-practice of self-administered acupressure. The primary outcome was caregiver stress (Caregiver Burden Inventory). Secondary outcomes included fatigue (Piper Fatigue Scale), insomnia (Pittsburgh Sleep Quality Index), depression (Patient Health Questionnaire), and health-related quality of life (QoL) (12-item Short-Form Health Survey version 2). An intention-to-treat analysis was adopted. Of 207 participants, 201 completed the study. Caregiver stress in the intervention group was significantly lower than that in the control group after 8 weeks (difference = -8.12; 95% confidence interval [CI] = -13.20 to -3.04; P = .002) and at 12-week follow-up (difference = -8.52; 95% CI = -13.91 to -3.12; P = .002). The intervention group, relative to the control group, also had significantly improved secondary outcomes of fatigue (difference = -0.84; 95% CI = -1.59 to -0.08; P = .031), insomnia (difference = -1.34; 95% CI = -2.40 to -0.27; P = .014), depression (difference = -1.76; 95% CI = -3.30 to -0.23; P = .025), and physical health-related QoL (difference = 3.08; 95% CI = 0.28-5.88; P = .032) after 8 weeks. Self-administered acupressure intervention significantly relieves self-reported caregiver stress and co-occurring symptoms in those caring for older family members. Further studies are needed to measure the symptoms objectively and to examine the clinical importance of the observed improvement in caregiver stress. J Am Geriatr Soc 68:1193-1201, 2020.

Dying With Dementia: Caregiver Observations of Their Family Members' Physical Decline and Behavioral or Psychological Changes During Their Last Days.

Family caregivers of older persons with dementia have significant challenges across many domains. These reported problems encountered over their caregiving time are for many reasons, but what makes the caretaking difficult is complicated by both the unknown nature of the dementia disease and the dying trajectory. While there are studies, primarily from health-care professionals, of this dying process and the last few weeks of life for older persons with dementia, much less is known directly from the family caregivers' perspectives and experiences. This qualitative study of 30 caregivers of family members aged 65 years and older who died with dementia-related diagnoses used in-depth qualitative interviews conducted over a 12-month period and directed content analysis to understand the data. The study asked what physical, behavioral, and psychological changes they observed and experienced during their family members' last weeks of life. Three primary themes were identified around behavioral and psychological changes: (a) they become different people, (b) did not recognize caregiver, and (c) wandering and getting lost; and two primary themes identified physical decline: (a) system started shutting down and (b) drastically diminished self-sufficiency. Implications for families and professionals are reviewed and discussed.

Burden in Tunisian Family Caregivers of Older Patients with Schizophrenia Spectrum and Bipolar Disorders; Associations with Depression, Anxiety, Stress, and Quality of Life

ABSTRACT Background There are very little data on the burden among caregivers of older adults with severe mental diseases. We aimed to assess the perceived burden among caregivers of family members with schizophrenia spectrum and bipolar disorders. Method A cross-sectional study was carried out with 52 older patients with schizophrenia spectrum and bipolar disorders and their family caregivers. Caregivers were assessed with the medical outcome survey short form (SF-36), the Zarit Burden Interview (ZBI) and the Depression Anxiety and Stress scales (DASS-21). Results Caregivers’ mental quality of life was impaired with an average mental score of 59.05. For a threshold value of 17, the level of perceived burden was considered as high for 42.3% of caregivers. After controlling for demographic variables (age and gender) and patients’ health-related variables (level of dependency, comorbidities, age onset of illness, number of hospitalizations and duration of clinical remission), caregivers’ levels of depression, stress, and SF-36 physical component significantly contributed to their perceived burden. Conclusions Certain modifiable risk factors play an inescapable role in increasing the level of burden among caregivers of older patients with serious mental illnesses. Clinical Implications Improving the quality of life and psychological well-being of family caregivers should be considered an integral part of treatment for serious mental illness in older adult patients.

Assessing Grief in Family Caregivers of Individuals With Alcohol Use Disorder or Substance Use Disorder using the Marwit-Meuser Caregiver Grief Inventory Short Form (MM-CGI-SF).

This study assessed grief in caregivers of family members with alcohol use disorder (AUD) and substance use disorder (SUD) using the Marwit-Meuser Caregiver Grief Inventory Short Form (MM-CGI-SF). We used snowball sampling to recruit participants who had family members with AUD and SUD. The sample was comprised of 100 caregivers of family members with AUD and 75 caregivers of family members with SUD. The original MM-CFI-SF was modified by changing the wording to reflect those with AUD and SUD. The 18-item instrument consisted of 3 factors: personal sacrifice burden, sadness and longing, and worry and felt isolation. The professional care of caregivers with family members with AUD and SUD should be addressed by health professionals in the same manner as dementia caregivers. AUD and SUD caregivers may also downplay the distress, require social support, or have a common reaction to the stress and grief encountered. The correlations were moderate to strong and significant between each of the factors for both AUD and SUD caregiver scale.

Experiences of Caregivers Caring for a Family Member Who Is Using Hemodialysis

In this qualitative phenomenological study using a purposive sample, six caregivers of patients on hemodialysis were interviewed about their experiences of caring for a family member who uses hemodialysis. Six major themes and 12 subthemes were identified. Perceptions of caregivers are that caregiving is hard work and stressful; however, caregivers found the experience to be meaningful, even though the stress may interfere with their own health status. Study limitations include a small sample that may not represent the entirety of caregivers' perspectives. Implications for practice include developing informal and formal support systems and exercise programs that help this population manage the stress associated with caregiving for family members using hemodialysis.

Experiences of Caregivers Caring for a Family Member Who Is Using Hemodialysis

In this qualitative phenomenological study using a purposive sample, six caregivers of patients on hemodialysis were interviewed about their experiences of caring for a family member who uses hemodialysis. Six major themes and 12 subthemes were identified. Perceptions of caregivers are that caregiving is hard work and stressful; however, caregivers found the experience to be meaningful, even though the stress may interfere with their own health status. Study limitations include a small sample that may not represent the entirety of caregivers' perspectives. Implications for practice include developing informal and formal support systems and exercise programs that help this population manage the stress associated with caregiving for family members using hemodialysis.

Facets of Faith: Spirituality, Religiosity, and Parents of Individuals With Intellectual Disability.

Although faith has particular prominence in the contemporary American landscape, its intersection with disability and families has received little attention. We examined the spiritual and religious lives of 530 parents and caregivers of family members who have intellectual disability. For most participants, faith had clear relevance and was reflected in their congregational participation, beliefs, practices, and strength of faith. Yet considerable diversity was apparent in the ways in which each was evidenced, which included a modest number of families for whom this was not a salient aspect of their lives. Most participants identified ways in which their spirituality and religious participation contributed to their well-being. However, access to social supports through a local congregation was more muted. We address implications for professionals who support these families and congregations who welcome them. We also offer recommendations for expanding the opportunities and supports parents and caregivers need to flourish in their faith.

Demencia és a család - Alzheimer Café a gondozó családok terhelődésének csökkentésére

Az utóbbi években több nemzetközi kutatás a demenciával élő időseket gondozó családok felé fordult.E kutatások jelentős része a gondozó családtag stressz-terhelődését és annak következményeit, a szerepkonfliktusokat, valamint a gondozó családon belüli feszültségeket vizsgálta. (Zarit et al. 1985, Aneshensel et al. 1995, Kaplan 1996, Zarit et al. 2005). A témaválasztásomban nagy szerepe volt annak felismerése, hogy Románia viszonylatában nem, vagy csak igen keveset tudunk a demenciával élő személyeket gondozó családok terhelődéséről és annak a primer gondozóra gyakorolt hatásáról. Éppen ezért, egy empirikus vizsgálat során, Erdélyben 50 olyan családdal készült interjú és kérdőíves felmérés, akik saját otthonukban ápolnak/ gondoznak demenciával élő időst, illetve 50 olyan családdal, akiknek a demenciával élő hozzátartozójukat, a vizsgálat időpontjától számítva az elmúlt 12 hónapban költöztették tartós bentlakásos otthonba. Az adatgyűjtés három évet (2015- 2017) vett igénybe. A kutatás magába foglalta a primer gondozó családtaggal folytatott tájékozódó interjút, amelyben a funkcionális akadályozottságot és a pszicho szociális nehézségeket mértük fel (Szabó 2000.). Erre épült, a szociális készségszint vizsgálata, amely az önellátó képesség és a meglévő szociális készségek, valamint a szociális alkalmazkodás fő jellemzőit tárta fel. Ebből a felmérésből azt is láthatjuk, hogy melyek azok a mindennapi feladatok, amelyekben a kliens segítségre szorul. A családon belüli gondozás kapcsán vizsgáltuk a demenciával élők önálló életviteli képességét is. E három szempont támpontokat nyújt a gondozó családtag „objektív terhelődésének” megítéléséhez. Erre épül a gondozási feladatok családon belüli megoszlásának áttekintése, amely abban segít, hogy megtudjuk, kik a kulcsszemélyek, akik a családon belül a primer gondozói feladatokat látják el. A családon belüli szerepek alakulásának vizsgálatára egy saját szempontrendszert dolgoztunk ki (Szabó - Kiss, 2015). Az objektív terhelődésből kiindulva a „szubjektív terhelődés” vonatkozásában fontos támpontokat szerezhettünk arról, hogy a gondozási terhelődés hogyan hat érzelmileg a gondozó családtagra. A vizsgálat eszköze az önellátó képesség részletesebb felmérésével, bővült, amellyel a demenciával élő személy funkcionális leépülésének mértékét vizsgáltuk (Szabó 2000.). Ehhez kapcsolódik az emlékezeti és viselkedési problémákat, értékelő nemzetközileg is ismert skála (Zarit, 1985), amely a demenciával élő személy, zavaró viselkedését méri és annak hatását a primer gondozóra. Ehhez kapcsolódik a primer gondozó családtag terhelődésének a felmérése (Zarit, 1985) és a gondozási feladatokhoz kapcsolódó negatív és pozitív attitűd vizsgálata (Farran et. al., 1999). A kutatás eszköztára kiegészül egy hat üléses fókusz csoporttal, ahol a résztvevő primer gondozók, egymás eseteit hallva a tematikus kérdések mentén nyitottabban tárják fel a gondozás kritikus időszakait, és az intézményi elhelyezés, döntő tényezőt. Jelen tanulmányban a doktori kutatásból csupán azok az adatok kerülnek közlésre, amelyek a gondozó családok szerepfeszültségének vizsgálati eredményeit tükrözik, és hozzájárultak a támogató jellegű Alzheimer Café elindításához.

PAACC: A MINDFULNESS-BASED MULTICOMPONENT PROGRAM FOR FAMILY CAREGIVERS OF PERSONS WITH DEMENTIA

Few interventions for family caregivers of persons with dementia (PwD) focus on both dementia care skill-building and the enhancement of acceptance and compassion towards oneself and the PwD. We designed a multicomponent, mindfulness-based 4-session caregiver intervention (Practice of Acceptance, Awareness, and Compassion in Caregiving, or “PAACC”) to reduce burden in caregivers of family members with Alzheimer’s disease and related dementias (AD/ADRD) and TBI-related AD. A prospective, randomized trial design is being implemented to compare the effectiveness of PAACC to the well-known, evidence-based REACH-VA intervention. Seventeen family caregivers (Mean Age = 68.71 years; 82% women; 30% had high school or less education) have participated in the trial thus far and provided qualitative responses to acceptability questions. High acceptability was noted for all intervention components of PAACC. Participants completed 95% of mindfulness homework during the study period. A majority also reported practicing spontaneous, informal mindfulness while engaged in daily activities (e.g., going for a walk, cooking). One participant noted incorporating mindfulness in her daily spiritual practice. The majority remarked that PAACC taught them to be more aware and accepting of the PwD’s illness. Others mentioned becoming more aware of which stressors triggered them, and that they were able to avoid arguments with the PwD because of this increased awareness. Overall, our results suggest that this mindfulness-based multicomponent intervention is a promising method for promoting stress reduction for family caregivers of persons with dementia regardless of age, stage of dementia, education level, or rurality. Implications for research and practice will be discussed.

CORRELATES OF FAMILY CAREGIVING FOR OLDER ADULTS AND EMOTIONAL STRAIN AMONG AFRICAN AMERICANS

Objectives: Despite the growing older African American population and its increasing needs for informal care, few caregiving studies have focused specifically on African Americans. This study aims to 1) identify demographic correlates of caregiving for older family members among African Americans and 2) identify caregiving and demographic correlates of emotional strain among African American caregivers. Method: Logistic regression and linear regression were based on the African American sub-sample of the 2015 Caregiving in the U.S. Survey (N=260). Demographic characteristics included age, gender, education, income, marital status, co-residence of care recipient in the caregiver’s home, relationship of care recipients to caregivers, and household size. Caregiving characteristics included hours of caregiving and whether respondents provide care for an older adult. Results: With respect to demographic correlates of family caregiving, older respondents were more likely to provide care for an older family member, and respondents were more likely to provide care to a parent/parent-in-law than to other relatives. Regarding emotional strain, age and household size were negatively associated with emotional strain, and hours of caregiving was positively associated with emotional strain. Discussion: This study identified demographic profiles of family caregiving and emotional strain. It also suggested the presence of unique risk and protective factors among older African American caregivers. Future research should test the underlying mechanisms between these factors and mental health outcomes for a better understanding of how caregiving strain can be attenuated.

FUTURE PLANNING AMONG OLDER CAREGIVERS OF FAMILY MEMBERS WITH INTELLECTUAL DISABILITY OR MENTAL ILLNESS

Objectives: This study aims to examine future planning among older caregivers for family members with intellectual disability or mental illness, focusing on preferences, predictors and barriers. Method: Data were drawn from 260 caregivers (aged 50 or older) to a family member with intellectual disability or mental illness in Shanghai, China. Caregivers rated six types of future care arrangement under three circumstances: (1) the ideal situation, (2) unable to provide care due to age-related illnesses, and (3) caregivers are deceased. Socio-demographic factors associated with future planning were examined using multinomial logistic regression. Caregivers also rated twelve barriers to future planning. Results: Government-subsidized care facility is the most preferable care arrangement across the three circumstances. While continuing family care was still preferred if caregivers were to become sick or deceased, it was a less preferred option in the ideal situation. Common barriers were the cost of institutional care and the inadequate skills of the staff. Regarding the predictors of future planning, the older the caregivers were, the less likely they had no future plans. Caregivers were more likely to prefer family care over institutional care if their family members had mild impairment. Caregivers of a family member with mental illness were more likely to have no future planning than caregivers of a family member with intellectual disability. Conclusion: This study identified the needs of older caregivers for future planning specific to different circumstances. It also identified demographic profiles of future planning and the caregiver population at risk of no future planning.

IMPROV FOR CARE: TEACHING CAREGIVERS IMPROVISATION IMPROVES MOOD AND SENSE OF BURDEN

There is a growing need for novel intervention for caregivers of family members with dementia. Improv for Care is a six-week program designed to teach improvisation (“improv”) skills to caregivers to practice flexible communication, build social support, and process the demands of caregiving through humor and play. This study aimed to examine changes in caregiver depression (Beck Depression Inventory-II), perception of burden (Zarit Burden Interview), qualitative experiences related to caregiving, and their cared-for person’s neuropsychiatric symptoms (Neuropsychiatric Inventory Questionnaire). Fifteen caregivers completed questionnaires before and after the Improv for Care program. Wilcoxon signed rank tests for related samples revealed significant declines in both caregivers’ depressive symptoms, Z = -2.64, p = .008, and sense of burden, Z = -2.16, p = .031, after completing the program. Caregivers reported that their loved ones’ neuropsychiatric symptoms increased during the course of the intervention, Z = -2.10, p = .036, though associated distress did not also increase, Z = -1.12, p = .265. Of the 15 caregivers, 12 completed follow up questionnaires three months after course completion, which showed that their post-intervention reduction in depressive symptoms remained stable, Z = -1.02, p = .306. The Improv for Care program shows promise as an intervention for caregivers to improve stress, mood, and coping skills.

Caring for Alzheimer's Disease Caregivers

The number of informal caregivers for family members with Alzheimer's Disease (AD) is rising dramatically in the United States. AD caregivers disproportionately experience numerous health problems and are often isolated with little support. An active lifestyle can help prevent and mitigate physical and psychological health concerns amongst AD caregivers. Research has demonstrated how pervasive exergames can encourage physical activity (PA) in the general population, yet little work has explored how these tools can address the significant PA barriers that AD caregivers face. To identify opportunities for design, we conducted semi-structured interviews and participatory design sessions with 14 informal caregivers of family members with AD. Our findings characterize how becoming an AD caregiver profoundly impacts one's ability to be active, perspectives on being active, and the ways that exergames might best support this population.We discuss implications for design and howour findings challenge existing technological approaches to PA promotion.

Unpaid carer inequalities: a public health concern

Abstract The number of unpaid carers is rising globally and is anticipated to grow given predictions on life expectancy, morbidities and limitations on care alternatives. The estimated number in England is 5.5 million. Significant international evidence exists of potential negative impact on employment, health and wellbeing which have individual and societal consequences. This presents a major public health concern, especially as much of the experience and health consequences remain a largely hidden issue. Drawing on two doctoral studies undertaken in the UK we expose the potential for significant health and social inequalities to be experienced by unpaid carers and offer models to enhance understanding and potentially more effective responses. The presenting author provided supervision and continues to research the topic. Both studies were set in a translational paradigm to maximise timely utility. The experiences of the participants were privileged while attempting to ensure that the clinical, education and policy potential of the research was incorporated. Study participants were care givers for family members with life limiting illnesses, principally cancers and dementia. Qualitative methodologies were employed in both studies; one drawing significantly on realist approaches and the other on grounded theory. There is generally a lack of consensus concerning when and how carers can best be supported. Although some support interventions were valued there are some fundamental tensions in service models which limit their potential. Specifically the centrality of the relationship is needs to be acknowledged and nurtured. Often, professionals often predominately draw on a medical model as the default intervention position when attempt to tackle carers’ health inequalities. These findings suggest that greater attention should be afforded to the potential of social coping strategies to create a more enabling rather than burden dominated perspective. Key messages unpaid (family)carers are at risk of being exposed to a range of health inequalities which can have individual and societal consequences. Interventions that acknowledge the relationship and draw on social dimensions may off coping may offer effective ways forward.

When Death With Dementia Is "A Memory Seared in My Brain": Caregivers' Recommendations to Health Care Professionals.

The purpose of this study is to determine family caregivers' recommendations for professional health care professionals on how to help prepare them for the death of an elder with dementia. Purposive criterion sampling was employed to identify 30 bereaved caregivers of family members aged 65 and older who died with a dementia-related diagnosis. In-depth, qualitative interviews were conducted over a 12-month period, and qualitative content analysis was used to analyze the data. Three primary themes emerged: (a) Educate Caregivers, (b) Lead Caregivers, and (c) Provide a Caring and Compassionate Presence. The results highlight the importance of various health care professionals' roles in preparing family caregivers for a death. In doing so, both the dying and their caregivers may have a better end-of-life experience with improved bereavement outcomes.

Enfrentamento da internação hospitalar do paciente adulto pelo familiar cuidador

Objetivo: conhecer como o familiar cuidador enfrenta a internação hospitalar do paciente adulto. Método: pesquisa descritiva e exploratória de cunho qualitativo realizada em abril de 2018 em um Hospital Universitário no sul do Brasil. Participaram 20 familiares acompanhantes. Os dados foram coletados por meio de entrevistas e submetidos à Análise Temática. Resultados: os sentimentos apresentados em relação à internação foram de preocupação, ansiedade, medo da morte e tranquilidade. A família elegeu um dos familiares para ser o principal cuidador ou realizou revezamento. Às vezes o cuidador necessitou pedir dispensa do trabalho para cuidar, outros familiares se dedicaram aos aspectos do viver fora do hospital e a família expandiu-se. Considerações Finais: é importante direcionar a assistência ao familiar cuidador, contemplando a humanização, a criação de vínculo e a comunicação, pois ele é o maior aliado dos membros da equipe de saúde no hospital.