Caregiving Journey Research Articles

Survey on Parkinson's Disease Diagnosis Impact: Patients, Caregivers and Health Care Professionals' Perspectives.

Background: The announcement of Parkinson's disease (PD) diagnosis may provoke negative feelings that impact the ability to cope with the disease and all life changes related to this new condition. There are scarce data on how to improve communication about PD diagnosis and which factors may influence this outcome. Methods: We performed a national French survey, investigating the diagnosis announcement impact on a large population of people living with PD (PwPD), who recently received the diagnosis (≤1 year since PD diagnosis), and on related caregivers and health care professionals (HCPs), from tertiary and community-based hospitals. Results: A total of 397 PwPD (45% female and 82% > 50 years old), 192 caregivers and 120 HCPs (69% neurologists) completed the questionnaire. The diagnosis was not expected by about 60% of PwPD and induced negative feelings in the majority (82%) of them. Negative feelings that PwPD experience in the moment of the diagnosis announcement were related with male gender [OR = 2.034, CI 95% 1.09-3.78; p = 0.025] and older age [OR = 1.05, CI 95% 1.01-1.08; p = 0.004], while tremor as the first symptom had a threshold significance [OR = 1.78, CI 95% 0.994-3.187; p = 0.052]. Half of the PwPD and caregivers considered that they did not receive enough information and one third had a short-term appointment to rediscuss the diagnosis. A total of 82% of PwPD expressed the willingness to have a multidisciplinary follow-up (PD nurse, psychologists). Only 24% of the HCPs had been trained for PD announcement. Conclusions: The way a PD diagnosis is delivered represents a pivotal moment in the journey of PwPD and caregivers. This process requires improvement in addressing the gaps expressed by PwPD, caregivers, and HCPs through a participatory approach.

A qualitative enquiry on the impact of mental illness stigma on caregiving role and experiences in Singapore.

Given that mental illness stigma is a common occurrence amongst people with mental illness and caregivers (CGs) can be a potential victim of stigma themselves, there is a need to examine caregivers' perspective on the phenomenon. This study is part of a larger study which aims to qualitatively examine the concept of mental illness stigma amongst different stakeholders in Singapore. Focus group discussions (FGDs) were conducted amongst 21 informal caregivers to explore the experience of stigma encountered by them and their care recipients, and how it may implicate their caregiving experience. Both inductive and deductive thematic analyses were employed to analyze the data. Three overarching themes of stigma encounters that may have implication on caregiving experience were identified: 1) Stigma within the family; 2) Structural stigma; and 3) Stigma by association. Experience of stigma within family (e.g., social exclusion and lack of understanding) limits the caregiving supports available to CGs. CGs also took up a mediating role between their care recipients and other family who may hold stigmatizing views. Witnessing their care recipients being subjected to structural disadvantages (e.g., employment, school, and mandatory conscription) can induce emotional stresses amongst CGs and motivate them to protest and seek redress on their behalf. Furthermore, encounters of stigma themselves (e.g., being judged or blamed for their loved one's condition) also led to feelings of guilt and self-blame amongst the CGs. These findings can aid the formulation of interventions in informing CGs on what to expect on their caregiving journey and supporting them in dealing with issues relating to stigma and highlight the importance of anti-stigma efforts in organizational settings such as schools, corporations, and government agencies.

“I never planned for it”—Exploration of expectations about caring for older parents

AbstractThe projected increase in older dependent adults will continue straining formal care services whilst increasing the reliance on unpaid carers, in England and internationally. While motivations and willingness to care among unpaid carers have been explored, expectations around the caregiving role remain under‐researched. This article delves into expectations of middle‐aged individuals around providing care to an older parent in the future. Data collected through six focus groups with 35 mid‐life individuals, a mix of individuals with and without caring experience, were analysed thematically, cross‐sectionally, and with reference to different phases in the caregiving trajectory. Participants showed predicted, in some cases normative, expectations about taking on the role of carer for an older parent. Such expectations were rooted in emotional and socio‐cultural factors and influenced how people self‐identified as a carer. Expectations about what the role would entail were unformed: they were described as conditional on the uncertain and changing care needs of the older parents (‘caregiving creep’). Those with caring experience highlighted that, in hindsight, their prior expectations did not match their actual experience of the role, requiring greater time commitment and impacting their life in ways they had not anticipated. When thinking about the future, participants envisaged stepped changes in care arrangements to meet increasing, albeit uncertain, care needs, but acknowledged their lack of awareness around the care options available to them. Policies aiming to improve general awareness about caregiving, support early identification of carers, and address their information need throughout their caregiving journey should be a priority.

Primary caregivers’ experiences of caring for people living with dementia in Ghana: a phenomenological study

BackgroundDementia is often associated with functional impairments that limit the independence of persons living with dementia (PwD). As such, many PwD often require a higher level of support provided by persons referred to as caregivers. Such caregiving activities tend to strain and stress the caregiver. Nonetheless, Ghana lacks empirical evidence and understanding of the effects of caring for PwD on the lives of primary caregivers. To help narrow this knowledge gap, we explored the perspectives of primary caregivers about the impacts of caring for PwD in Ghana.MethodsUsing a descriptive phenomenological design, we conducted in-depth interviews with primary caregivers in the Ashanti region, Ghana. A semi-structured interview guide was used as the data collection instrument. The data analysis followed Collazi’s thematic analysis framework. All coding and categorization were done in NVivo-12.ResultsFive themes emerged from the analysis. These themes included (a) sacrifice of personal interests, and time commitments; (b) financial strain and negative impact on job; (c) feelings of stress and burnout; (d) experience of abuse and stigma; and (e) perceived blessing of caregiving.ConclusionThe study’s findings resonate with existing literature, highlighting the consistent struggles faced by caregivers. Sacrificing personal interests, navigating financial strains, and grappling with stress and burnout emerged as pervasive themes. We conclude that despite the negative impacts of caring for PwD, caregivers perceived their role as associated with blessings, deriving positive meaning and fulfilment from their caregiving journey. This study underscores a need to build more compassionate communities in rural settings of Ghana.

The experience of gender in spousal caregiving: A phenomenological psychological study (Greece).

To explore how spousal caregivers of older people undergoing rehabilitation experience gender within the Greek community. A psychological phenomenological design and analysis were used to illuminate the unique meanings 11 spousal caregivers attribute to their experience of gender by gathering qualitative data via interviews. The data provided an insight into the structure of the experience of gender for the spousal caregivers as a normative diachronic identity in a succession of phases: normative constitution, alienation, and reparation. The findings highlight the influence of gender stereotypes on spousal caregivers' self-concept, agency, caregiving evaluations, and practices, emphasizing the importance of adopting an intersectional perspective in future research and interventions, considering various factors such as ethnicity, gender, sexuality, age, power dynamics, and cultural norms. Spousal caregivers experience alienation on entering the caregiving journey, with gender-related vulnerabilities affecting their psychological well-being. Addressing these vulnerabilities can improve caregivers' mental health and foster effective coping strategies. The study emphasizes the moral aspect of caregiving, highlighting the relationship between a sense of obligation, feelings of guilt, gender norms, and motivations calling for challenging self-sacrificial morals and societal norms associated with them to empower caregivers to prioritize their well-being while maintaining their caregiving motivations. This shift in perspective can lead to a more positive and fulfilling caregiving experience. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

A scoping review of decision-making tools to support substitute decision-makers for adults with impaired capacity.

Substitute decision-makers (SDMs) make decisions that honor medical, personal, and end-of-life wishes for older adults who have lost capacity, including those with dementia. However, SDMs often lack support, information, and problem-solving tools required to make decisions and can suffer with negative emotional, relationship, and financial impacts. The need for adaptable supports has been identified in prior meta-analyses. This scoping review identifies evidence-based decision-making resources/tools for SDMs, outlines domains of support, and determines resource/tool effectiveness and/or efficacy. The scoping review used the search strategy: Population-SDMs for older adults who have lost decision-making capacity; Concept-supports, resources, tools, and interventions; Context-any context where a decision is made on behalf of an adult (>25 years). Databases included MEDLINE, Embase, CINAHL, PsycINFO, and Abstracts in Social Gerontology and SocIndex. Tools were scored by members on the research team, including patient partners, based on domains of need previously identified in prior meta-analyses. Two reviewers independently screened 5279 citations. Articles included studies that evaluated a resource/tool that helped a family/friend/caregiver SDMs outside of an ICU setting. 828 articles proceeded onto full-text screening, and 25 articles were included for data extraction. The seventeen tools identified focused on different time points/decisions in the dementia trajectory, and no single tool encompassed all the domains of caregiver decision-making needs. Existing tools may not comprehensively support caregiver needs. However, combining tools into a toolkit and considering their application relevant to the caregiver's journey may start to address the gap in current supports.

L’expérience de transitions de conjoints-aidants d’une personne vivant avec un trouble neurocognitif à début précoce

Introduction : Les personnes vivant avec un trouble neurocognitif à début précoce (TNC-DP) éprouvent de nombreuses difficultés, tant dans leur vie professionnelle, personnelle, que familiale et conjugale, et le diagnostic prend souvent de nombreuses années à être posé. Pendant cette attente, peu de services adaptés sont disponibles. Des études ont décrit les changements qu’entraîne cette situation pour les conjoints, mais peu d’écrits se sont intéressés aux transitions qui jalonnent leur cheminement. Objectif : Explorer, chez des conjoints-aidants de personnes vivant avec un TNC-DP diagnostiqué depuis plus de 2 ans, les perceptions des transitions auxquelles ils font face, les conditions qui ont un impact sur la réussite des transitions, et les patrons de réponses qu’ils utilisent. Méthode : S’appuyant sur la théorie des transitions de Meleis et al. (2000), cette étude pilote a été réalisée au moyen d’entrevues semi-dirigées menées auprès de 3 conjoints-aidants. Le verbatim des entrevues transcrites a été analysé selon la méthode proposée par Paillé et Mucchielli (2021). Résultats : Les thèmes ayant émergé de l’analyse sont : 1) un long parcours de proche aidance jalonné de multiples transitions; 2) des conditions personnelles et communautaires qui influencent le succès des multiples transitions et 3) une variété de stratégies pour composer avec le rôle de conjoint-aidant. Discussion et conclusion : Les résultats de l’étude offrent un éclairage sur la réalité de certains conjoints-aidants. Ils peuvent inspirer la poursuite d’études avec un échantillon élargi et intégrant, par exemple, des méthodes mixtes, pour explorer davantage le vécu de ces aidants. Ils offrent aussi certaines pistes pour guider les professionnels de la santé dans l’évaluation de leurs besoins et suggèrent l’importance de développer des interventions et de services pour faciliter leurs diverses transitions.

Pilgrimage in pediatric palliative care: The journey of caregivers

Admission of terminally ill patients into pediatric palliative care remains a challenge in Mexico and Latin America, despite the multiple benefits of early transfer. In this context the trajectories in search of health care of patients and caregivers have not been documented. Therefore, the objective of this study was to describe and analyze the experiences of primary caregivers and family members of pediatric patients in the palliative care unit of a Children's Hospital in Mexico, between October 19, 2019, and January 19, 2022. We used the framework of health pilgrimage, which comprises the transformative search of healing for patients, focusing on health barriers and the necessary displacement in search of care. With information obtained through interviews, we reconstructed the pilgrimages in search of health care navigating the Mexican healthcare system. Furthermore, we describe the experience of the primary caregiver accompanying the sick child during their journey to palliative care. We recount the adverse factors associated with this pilgrimage, such as the emotional and socioeconomic impact on primary and secondary caregivers.

CULTURAL INFLUENCES ON AMERICAN INDIAN AND ALASKA NATIVE DEMENTIA CAREGIVERS

Abstract Associated with aging, Alzheimer’s disease and related dementias (ADRD) are likely having a disproportionate effect on North American Indigenous communities due to longer life expectancies and high rates of chronic diseases. Despite missing prevalence data on ADRD in for Native Elders, it is known that one in five American Indians and Alaska Natives experience subjective cognitive decline and one in four adults are currently caregivers. Similarly, Native Hawaiians and Pacific Islanders (NHPI) are twice as likely to have dementia compared to non-Hispanic Whites. Yet, little is known about the journey of dementia caregivers within American and Alaska Native, Native Hawaiians and Pacific Islanders (NHPI) and how their unique cultural influences shape their caregiving experiences within their communities. We will present the voices from the transcripts of three 3 different qualitative data sets that include 93 American Indians and Alaska Natives, and six Native Hawaiian/Pacific Islander caregivers and elders about their personal experiences with taking care of family or community members with dementia and approaches to care. in their communities. The presentation focuses on the influences on cultural values on the caregiving experience, caregiver access to resources, and generative moments throughout caregiving. Results identify similarities among these groups but also distinct variations, which emphasize the importance of linguistic and culturally tailored research, interventions, and policies. Based on our findings, we outline culturally specific recommendations to improve the caregiving experience for each of these Indigenous groups.

RELATIONSHIP-TYPE DIFFERENCES IN SUPPORT SEEKING AND MENTAL HEALTH FOR ADULT CHILDREN OF PARENTS WITH MEMORY LOSS

Abstract Research shows that midlife children still rely on their parents for emotional and tangible support, which has implications for their mental health. Little is known about how these dynamics change when a parent enters the early stage of dementia or memory loss. One characteristic that may be important for these dynamics is the relationship-type (daughter-mother (n= 82), daughter-father (n= 29), son-mother (n=17), son-father (n= 14)). As part of a larger study, adult children 18 years of age and older (n= 142) completed self-report surveys including measures of emotional and tangible support seeking from their parent (Feeney, 2004), the 10-item CESD (Orme et al., 1986), the 12-item Zarit Burden Inventory (Bédard et al., 2001), and the PANAS (Watson et al., 1988). Results showed that tangible and emotional support seeking levels were low across all dyad-types, with no differences between groups. There was a trend for depressive symptoms (F= 2.559, p= .058) showing more in daughter-father than in son-mother dyads. Daughter-father dyads were the only group meeting the depression cut-off score. There were significant differences for burden (F= 3.377, *p= .020) with more burden in daughter-mother compared to son-father dyads. For the PANAS (F= 2.926, *p= .036), there was more negative affect in daughter-father compared to daughter-mother dyads. Results suggest that the relationship-type of the adult child and parent matters for mental health in the early stages of memory loss. This has implications for dyadic interventions helping adult children and their parents cope in the early stages of the dementia caregiving journey.

DEMENTIA CAREGIVER RE-ENTRY INITIATIVE: FINDING NEW DIRECTION AND PURPOSE AFTER CAREGIVING ENDS

Abstract Many former dementia caregivers struggle to find a “new normal” when the long and exhausting caregiving journey ends. Grieving eases, the estate is settled, and now what? Who am I after caregiving ends? Following 12 years of intense care for their parents, two with dementia, Sheryl Fairbanks and Warren Wolfe searched nationally for a program that might help them restart their lives. They found none. In 2016, they launched the Former Dementia Caregiver Re-Entry Initiative, which has served more than sixty people. At a kick-off meeting, former caregivers said their deepest needs were reestablishing relationships with family and friends and finding new life purpose. Typically, six to eight former caregivers meet twice a month – online since the COVID pandemic - and focus on moving forward. They share that these meetings give them a renewed purpose, deeper social connections, increased energy and a new sense of self-esteem. “My kids care. My friends care,” one member explained. “But nobody who hasn’t lived it really knows how hard that time was, and how hard it is to find a new path.” Four similar programs have started in Minnesota, The couple has written a book to encourage more. In 2022, Ms. Fairbanks and Mr. Wolfe became Community Leads in a University of Minnesota research project to see if Black former dementia caregivers have unmet needs and whether this model might help. Preliminary findings will be presented at the Addressing the Needs of African American Bereaved Dementia Caregivers symposium at this GSA annual meeting.

Program providers’ perception of caregiving competency of family caregivers according to dementia stage

AbstractPurposeFamily caregivers take significant roles in helping their relatives with dementia to meet daily life needs. Various support programs have been developed to decrease family caregivers’ stress and burden. Among the studies conducted so far, there is a lack of programs developed based on caregiving competencies according to each stage of dementia. To prepare for the development of a program based on caregiving competencies for stages of dementia, this study aimed to investigate the appropriateness and importance of family caregivers’ caregiving competency from the perspectives of the program providers.Method175 program providers who participated in a support program for family caregivers of people with dementia were recruited in this study. We used a 40‐item questionnaire, which consisted of caregiving competencies according to stages of dementia: 14 items for the early stage, 14 items for the middle stage, and 12 items for the advanced stage. For each item, the participants were asked to score its appropriateness and importance using 5 Likert scale.ResultStudy findings indicated dementia caregiving competencies that scored as most appropriateness and importance in different dementia stages. Specifically, “Eliminating prejudice against dementia” (4.07±0.75, 4.14±0.74, respectively) were identified in the early stage, “Managing family caregivers’ stress” (4.07±0.76, 4.15±0.74, respectively) in the middle stage, and “Properly utilizing necessary long‐term care services” (4.19±0.77, 4.26±0.72, respectively) and “Decision making with other family members so that people with dementia can end their lives comfortably” (4.09±0.74, 4.14±0.73, respectively) in the advanced stage. Whereas, care competencies that gained the lowest scores of appropriateness and importance comprised: “Medical and legal documents required after diagnosis of dementia” (3.80±0.78, 3.87±.077, respectively) in the early stage, “Participating in self‐support groups” (3.79±0.79, 3.90±.078, respectively) in the middle stage, and “Share valuable memories with dementia” (3.75±0.77, 3.83±.078, respectively) in the advanced stage.ConclusionThis study figured out the importance of the caregiving competencies that should be delivered to the family caregivers of people with dementia from the perspectives of the program providers. Findings from this work would be valuable resources in developing effective family support programs to improve the dementia caregiving competency of family caregivers during their caregiving journey.

Success and Challenges of Evaluation and Research within the Alzheimer’s Association

AbstractBackgroundCaregivers of people living with dementia often experience increased stress, depression, and isolation during their caregiving journey. The Alzheimer’s Association offers the live, 24/7 helpline, which provides support, resources, and information by trained staff to help offset the struggles caregivers experience. Also through the helpline, care consultations are provided, which aim to help caregivers navigate through difficult times and decisions associated with the disease.MethodTo better understand the impact of care consultations, randomized control studies were designed to be implemented in a live call center, which presented both challenges and successes.ResultA research team was established and protocols put in place to effectively manage randomization, pre‐survey, intervention, and post‐surveys.ConclusionThis presentation will discuss challenges and successes of conducting research in a live call center, as well as implications for further research.

Support needs of familiar caregivers caring for persons who are minimally responsive: an ecological system approach

Objective: The main aim of this study was to identify the multidimensional support needs of familiar caregivers and to identify the lessons they had learned throughout the caregiving process. Background: Persons who are minimally responsive require continuous medical care—either at home or at a care facility. The home context is often preferred as it facilitates the care process in a familiar environment and reduces adverse health outcomes, such as mortality. Home care of the person who is minimally responsive is often managed by familiar caregivers who support these individuals in all aspects of daily living. This caregiving experience may be burdensome for the familiar caregiver as increased physical, psychological, emotional, social, and financial requirements, and responsibilities could cause multidimensional stressors. Methods: A qualitative descriptive design using 7 semistructured in-depth interviews was used with 7 familiar caregivers of persons who were/are minimally responsive. These participants were obtained from a private care facility and thematic analysis was used to analyze the in-depth interviews. Results: The ecological systems theory was used to identify and link 11 themes with subthemes to the support needs reported by the caregivers. In addition, the results included the lessons learned by these caregivers from their caregiving journey. Conclusions: From the findings of this study, it is clear that caregivers mostly experience challenges within the microsystem and mesosystem with limited challenges in other systems. These systems are, however, integrated and can impact the individual caregiver substantially. Health care practitioners, in particular, should be aware of caregivers’ support needs and give them adequate support at home.

Competency development for a volunteer navigation program to support caregivers of people living with dementia: A modified e-Delphi method.

Caregivers of people living with dementia are pillars of the care community. Providing them with adequate support throughout their caregiving journey is essential to their quality of life and may also contribute to improving the care of people living with dementia. Nav-CARE (Navigation - Connecting, Advocating, Resourcing, Engaging) is a volunteer-led navigation program that provides support to older adults with life-limiting illnesses who are living in the community. However, Nav-CARE does not provide support directly to caregivers of people living with dementia. To adapt Nav-CARE to support caregivers, we needed to establish caregivers' needs and the competencies volunteer navigators should be trained in to support caregivers to meet these needs. To do so, a modified e-Delphi method was utilized, which consisted of administering three sequential questionnaires to a panel of 35 individuals with expertise in a variety of dementia related domains. Through this, two final lists of 46 caregivers' needs and 41 volunteer competencies were established to inform the development of volunteer navigator training curriculum. Findings suggest that trained volunteer navigators may be able to support caregivers of people living with dementia throughout the disease trajectory and can be used to inform the development of future dementia navigation programs.

Development of a baby cot with temperature and weight monitoring features: Focus on parents with phocomelia and upper limb amputation

Caring for an infant is a tough and demanding task that presents various challenges for parents. This is especially true for parents who have physical disabilities, as they face unique obstacles in their caregiving journey. For parents with limited movement in their upper limbs, keeping track of important aspects of their baby's health, like weight and temperature, can be a difficult and exhausting task, necessitating innovative solutions to ensure that these parents can provide the best possible care for their child while also promoting their independence. While previous studies have established technology that enhance baby's comfort and safety in cradles and cots, and in contrast to existing products that may require separate monitoring devices or manual interventions, this work presents a significant shift by focusing on the specific needs of parents with phocomelia and upper limb amputation, to enable them to provide independent and attentive infant care. We developed a voice recognition-controlled smart baby cot equipped with real-time temperature and weight monitoring features, and a liquid-crystal display (LCD) feedback, to assist such parents in predicting their baby's well-being. We conducted both finite element analysis (FEA) and ten experimental performance evaluations on the prototype, with and without a load (baby) to assess the cot's load-bearing capacity across different positions, its sensitivity to household noise, and consistency in temperature and weight reading. Our findings demonstrated consistent load-bearing capability and precise weight and temperature measurements, with an overall standard error of 0.03. The voice activation system also performed effectively in environments with noise levels below 80 dB. This work promotes parental autonomy and has the potential to benefit infants and parents in various contexts, including resource-constrained settings. Additionally, it aligns with the global discourse on inclusive healthcare and technology, contributing to the objectives of Africa's Agenda 2063 and Sustainable Development Goal (SDG) 3.

294 The value of psycho-educational and peer groups for dementia family carers

Abstract Background Approximately 60,000 informal carers are caring for Persons with Dementia (PwD) in Ireland. The care giving provided by family members often enables PwD to remain living in their own homes for longer, which is associated with more positive outcomes and quality of life for PwD. However, given that dementia is a progressive illness, affecting the whole person and their ability to fulfil their activities of daily living, the task of caring can become incrementally more difficult over time. Family carers have articulated the need for increased information and support to assist them in their caregiving role in numerous studies. Living Well with Dementia monthly family carer evenings, facilitated by experienced cross-service interdisciplinary healthcare professionals aim to provide information and support on a range of relevant issues related to caring for a PwD. The average monthly attendance is forty family carers, predominantly spouses and adult children. Methods A self-administered survey was completed at the final carers evening of the Spring/Summer 2023 series. The survey was also circulated to family carers subscribed to the mailing list. Results Carers overwhelmingly valued the opportunity to come together in a structured supportive environment. The opportunity to sit with peers and share their experiences of caring for a loved one with dementia was viewed as supportive and deeply valued. The psychoeducational component focusing on dementia and mental health; communication skills; self-care for carers; planning ahead and changes to relationships, was viewed as a means of enhancing coping skills and was greatly appreciated by family carers. Conclusion The Carers Evenings provide a structured supportive environment in, which family carers can come together to share experiences, enhance their knowledge of varying aspects of the dementia and caregiving journey, and develop coping strategies.

Living beyond loss: a qualitative investigation of caregivers’ experiences after the death of their relatives with amyotrophic lateral sclerosis

Background Caregivers of Amyotrophic Lateral Sclerosis (ALS) patients experience varying psychological responses following the patient’s death, including sadness, loneliness, guilt, and a loss of purpose. Objectives This research aims to investigate the caregiver journey experienced from the time of diagnosis to the loss of a care recipient, with a specific focus on understanding the factors that contribute to improved coping with bereavement. Methods The present study used the Interpretative Phenomenological Approach (IPA) to qualitatively explore the accounts of 41 Italian bereaved caregivers of people affected by ALS (Mean Age = 59.78; Female: 60.98%; Male: 39.02%). Results Results revealed 5 overarching themes representing 5 macro areas that emerged from the analysis of the interviews (“Caregiver’s perception of his/her life”, “Caregiver’s feelings”, “Caregiver’s life after patient’s death”, “Caregiver’s disease description”, “Caregiver’s help resources”), these were further defined based on 12 main themes, which were, in turn, articulated into 30 subthemes. The transition from life before ALS (“a peaceful landscape”) to caregiver life (compared to the color “black”) was a “shock”, during which caregivers had to change their needs. However, life after the person living with ALS’ death was both characterized by a sense of “re-birth” and “emptiness”, and a general need for “psychological assistance” and “social support”. Conclusions Results emphasize the need to improve the psychological support offered to caregivers of person living with ALS after the patient’s death, tailoring it to the specificity of the condition, to meet their emotional needs, reduce isolation and help them cope with practical challenges and plans.

The Man in the Mirror: Reflections on Dementia Caregiving in Lebanon

ABSTRACT In this article, I study the different expressions of grief that I experienced while taking care of my Father who lived with Alzheimer’s for over a decade, in Beirut, Lebanon. As his primary caregiver, I was shocked by the reaction of the medical team who, at times, treated my Father as ‘invisible.’ Drawing on a parallel between Pokr Mher, an Armenian mythological figure, and my Father’s status locked in the house for years, I explore how alienation from friends and family affected him. I stress the caregiver’s significant and under-represented role, possible burnout, and withdrawal from society. In a country entrenched in corruption, and sinking in economic and political malaise, the Beirut Port Blast created an immense wave of collective grief, paralleled and even outweighed by the extracted grief of going through the Alzheimer’s arc. I shed light, too, on the importance of one’s mother tongue in dementia care. Discussing end-of-life matters in one’s own language may carry with it a finality that a second language masks. Finally, in seeking to bequeath meaning to my caregiving journey, I emphasise the role of life writing as a tool of remembering and focusing on the fullness of the forget-fullness journey.

An internet‐based support program for family caregivers of community‐dwelling people with dementia: A pre‐post pilot study

AbstractBackgroundCaregivers of people with dementia faces difficulties while constantly caring for their loved ones. Providing support programs should consider for promoting their experience of caregiving, quality of care, and will lead to delay institutionalization of dementia people. Implementing onsite support programs meets obstacles during the Covid‐19 pandemic, internet‐based interventions could be considered as a potential alternative.MethodsThis is a pre‐post pilot intervention study for primary family caregivers of community‐dwelling people with dementia. The 8‐week intervention program was delivered to the participants using ZOOM meetings software. This program consisted of 8 modules (one for each week): 1) reflecting on my caregiving journey, 2) understanding about dementia as a caregiver, 3) taking care of myself, 4) managing stress, 5) communicating with others, 6) learning how to take care of dementia people, 7) pleasant daily life, and 8) planning my caregiving journey. To assess the effects of the program, five caregiver’s outcomes were measured: Positive Aspects of Caregiving, (PAC), Caregiving Self‐Efficacy Scale (CgSES), Perceived Stress Scale (PSS), Health Risk Behaviors (HRB), and satisfaction.Results20 caregivers participated and 18 fully completed the pilot program. The participants have the mean age is 70.6, and 3.5 years playing the role of a family caregiver. The study findings found that the program significantly improved the PAC (P = .001), PSS (P = .027), and three sub‐domains of HRB: physical health (P < .000), mental health (P = .048), and leisure activities (P = .023). Whereas, though scores of the CgSES, and three remaining sub‐domains of HRB: care difficulty, building relationships, and getting help from others were better at the posttest compared with the pretest, these changes were not statistically significant. The participants scored 4.72 (maximum is 5) for their satisfaction with the program.ConclusionThis intervention program successfully improved quality of life and experience of the family caregivers related to their caregiving. Such online programs are a feasible solution in delivering supports to a huge subject anywhere while still mandated social distancing in this unpredictable Covid‐19 pandemic. Therefore, expanding this pilot should be considered.