Caregivers’ View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis—How Can We Improve Holistic Care in ALS?

Multidimensional socio-medical care with an early integration of palliative principles is strongly recommended in amyotrophic lateral sclerosis (ALS), but provided inconsistently. We conducted telephone interviews with 49 former caregivers of deceased ALS patients to examine their experience of care in the terminal phase including caregiver burden. Patients who received specialized palliative care (45% of patients) were more likely to die at home (p = 0.004) and without burdening symptoms (p = 0.021). The majority of caregivers (86%) reported deficits in socio-medical care. Most frequently mentioned were problems receiving medical aids (45%) and a lack of caregiver support (35%). A higher level of deficits experienced by caregivers was associated with negative health outcomes on the side of the caregivers (reported by 57% of them; p = 0.002) and stronger caregiver burden (p = 0.004). To provide good quality of dying to patients and reduce the burden on caregivers, multidimensional—including palliative—care in ALS urgently needs to be strengthened in the healthcare structures.

Factors associated with risk, perception and knowledge of falls in elderly people

ABSTRACT Objective: To verify the factors associated with risk, perception, and knowledge of falls; and pain among older adults. Method: A cross-sectional study carried out in the Emergency Service of a teaching hospital in the city of São Paulo between September 2019 and March 2020. We selected 197 older adults aged 65 and over, who were not disoriented or confused, of both genders. The instruments Awareness Questionnaire on the Risk of Falls, Morse Fall Scale and Numerical Pain Scales were applied. Mann-Whitney and Kruskal-Wallis tests were used. Results: Interviewees with a high risk of falls in older adults (p = 0.0041); those with a support network had a lower perception and knowledge about the risk of falls (p = 0.0025) and lower percentage of severe pain (p = 0.0033). Conclusion: Factors associated with risk, perception and knowledge of falls and pain among older adults were age, family income, number of dependents, caregiver, support network, hypertension, impaired walking, antihypertensive medication, lipid-lowering medication, level of education, comorbidities and religion.

Informal caregiver support needs and burden: a survey in Lithuania

IntroductionA demand for informal care exists worldwide. Lithuania presents an interesting case example where the need for the informal care is increasing, but relatively little research has been conducted documenting caregivers’ experiences and needs.ObjectivesThe main objective of this study was to investigate Lithuanian informal caregiver characteristics, support needs and burden. In addition, the impact of the COVID-19 on the caregiver’s and care receiver’s well-being was investigated.MethodsThe study was conducted online between May and September 2020. Informal caregivers and individuals with informal caregiving experiences were invited to participate in the survey. The survey questionnaire comprised 38 multiple-choice items including participant demographic characteristics, availability of the support, support needs, well-being and the impact of the COVID-19 pandemic. In addition, caregiver burden was assessed with the 24-item Caregiver Burden Inventory (CBI).ResultsA total of 226 individuals completed the survey. Most of the participants were women (87.6%). Almost half of the participants (48.7%) were not receiving any support, and a total of 73.9% expressed a need to receive more professional support. Participants were found to experience high burden on the CBI (M=50.21, SD=15.63). Women were found to be significantly more burdened than men (p=0.011). Even though many participants experienced psychological problems (55.8%), only 2.2% were receiving any psychological support. Finally, majority of the participants did not experience any changes in their own (63.7%) or the well-being of their care receiver (68.1%) due to the COVID-19 pandemic.ConclusionMost of the participants were identified as intensive caregivers experiencing a high burden. A majority did not experience changes in their well-being due to COVID-19. We propose several recommendations for increasing accessibility and availability of support for informal caregivers in Lithuania based on the study findings.

Rethinking individual autonomy in medical decision-making for young adults reliant on caregiver support: A case report and analysis

There is a gap in the clinical bioethics literature concerning the approach to assessment of medical decision-making capacity of adolescents or young adults who demonstrate diminished maturity due to longstanding reliance on caregiver support, despite having reached the age of majority. This paper attempts to address this question via the examination of a particular case involving assessment of the decision-making capacity of a young adult pregnant patient who also had a physically disabling neurological condition. Drawing on concepts from adolescent bioethics and feminist critiques of bioethical theory, we argue that limited life experience, secondary to a disabling neurological condition, can result in a lack of adult-like capacity even in a patient who is legally an adult. In such cases, it may be that autonomy, to the extent that it is to be relevant and meaningful, must be viewed through a relational lens. Furthermore, clinicians may avoid unjustifiably paternalistic practices by working with the patient help her gain a better appreciation of the consequences of her decision, thereby calling forward her capacity rather than resorting to being directive in counseling. We conclude that lessons from this case can be used to approach ethically complex instances of medical decision-making in adult patients with normal cognition but diminished experiential maturity.

The Caregiver Support Ratio in Europe: Estimating the Future of Potentially (Un)Available Caregivers

The caregiver support ratio (CSR) is defined as the number of potential caregivers aged 45–64 years, the most common caregiving age range, for each person aged 80+, the subgroup of older adults most at risk of needing long-term services and support. This study uses data from the CENSUS HUB database and from the UN database to calculate the current (last year available: 2011) and projected (2020, 2030, 2040 and 2050) CSR for a group of European countries. Mediterranean countries, France, Belgium, and Sweden presented the lowest CSR (5:1) in 2011. The countries with the highest CSR were Slovakia (9:1) and Ireland, Poland, Cyprus, and Malta (8:1). The estimated CSR is expected to progressively decline from 6:1 (2011) to 2:1 (2050) for all countries. Although differences in the CSR exist between countries, the number of people aged 45–64 who are available to care for each person aged 80+ will decrease uniformly in the coming decades. Cross-national challenges for gerontological social policies and healthcare provision are expected due to the increasing demand for long-term care among the oldest population.

“Care to Plan”: Delivering Personalized Recommendations to Support Caregivers of People Living with Dementia (Preprint)

BACKGROUND Estimates suggest that 6.2 million Americans aged 65 and older are living with Alzheimer’s dementia in 2021 and by 2060, that number could more than double to 13.8 million. As a result, public health officials anticipate a greater need for caregivers for persons with Alzheimer’s disease or a related dementia (ADRD), as well as support resources for both people living with dementia (PLWD) and their caregivers. Despite the growing need for dementia caregiver support services, there is a lack of consensus regarding how to tailor these services to best meet the heterogeneous needs of individual caregivers. To fill this gap, “Care To Plan” (CtP), an online tool for caregivers of PLWD, was developed to provide tailored support recommendations to dementia caregivers. OBJECTIVE The objective of this study was to formally explore the feasibility, acceptability and utility of CtP for 20 family members of PLWD within a health system over a one month time period using a mixed methods parallel convergent design. METHODS A moderately sized health system in the mid-Atlantic region was selected as the site for CtP implementation where 20 caregivers who were family members of PLWD were enrolled. The web-based CtP tool was used directly by caregivers and facilitated by a healthcare professional (i.e., a “senior care navigator”/SCN). Caregivers were given a 21-item review checklist to assess barriers and facilitators associated with reviewing CtP with a SCN. Following the 21-item review checklist, semi-structured telephone interviews, which included 18 open-ended questions, focused on the facilitators and barriers to CtP implementation and recommendations for future implementation. RESULTS Quantitative results suggested that 76.5% and 85.7% of caregivers agreed or strongly agreed that after using the tool they were able to find a service that would meet their needs and those of their care recipient, respectively. Qualitative analysis identified four themes regarding facilitators and barriers to implementation: 1) caregiver factors, 2) SCN factors, 3) CtP tool system factors, and 4) recommendations and resources factors. CONCLUSIONS Care to Plan was not only found to be feasible, but a valuable tool for caregivers seeking resources for themselves as well as their PLWD. Longer-term evaluation findings aim to generate results as to how CtP can be integrated into care plans for caregivers and how SCNs can provide additional support for caregivers for PLWD over an extended period of time.

Stakeholder informed development of the Emotion Awareness and Skills Enhancement team–based program (EASE-Teams)

Emotion dysregulation (ED) underlies psychiatric symptoms and impedes adaptive responses in autistic individuals. The Emotion Awareness and Skills Enhancement (EASE) program was the first mindfulness-based intervention designed to target emotion dysregulation in autistic adolescents (12–17 years old). This project partnered with stakeholders to adapt EASE for autistic adolescents and adults with co-occurring intellectual disability and autistic elementary-aged children, groups who often benefit from caregiver support in treatment. Over three adaptation phases, we: (1) elicited stakeholder and expert feedback to adapt the original EASE program for autistic individuals with intellectual disability; (2) redesigned the adapted manual and expanded the target age range following a small “micro-trial” with a sample of autistic adolescents and adults with intellectual disability ( n = 6); and (3) demonstrated feasibility and acceptability of a caregiver-client team-based approach (EASE-Teams) in a sample of 10 autistic individuals with and without intellectual disability (ages 7–25) and their caregivers. EASE-Teams was both acceptable and helpful to families. Significant improvements were noted in participant emotion dysregulation, psychiatric symptoms, and caregiver stress from their child’s dysregulation. Findings suggest that EASE-Teams may be appropriate for heterogeneous developmental and cognitive needs. Future research to establish efficacy and refine EASE-Teams with community providers is warranted. Lay abstract Emotion dysregulation (ED) impacts mental health symptoms and well-being in autistic individuals. In prior work, we developed the Emotion Awareness and Skills Enhancement (EASE) to improve emotion dysregulation with autistic adolescents (aged 12–17). The study team partnered with autistic individuals, their caregivers, and expert clinicians to adapt EASE for autistic adolescents and adults with co-occurring intellectual disability and autistic elementary-aged children, groups that often benefit from caregiver support in treatment. In three phases, we (1) gathered caregiver and expert feedback to adapt the original EASE program for autistic adults with intellectual disability, (2) revised the treatment after using it with six autistic adults with intellectual disability, and (3) tested the newly developed caregiver–client team-based treatment, called EASE-Teams, in a small group of 10 autistic individuals with and without intellectual disability (aged 7–25). Families found EASE-Teams to be acceptable and helpful. We found improvements in emotion dysregulation and mental health symptoms for autistic participants. Caregivers reported less stress from their child’s dysregulation after participating. These results show that EASE-Teams can be appropriate for different developmental and cognitive needs. Future studies will need to test the benefits of the treatment in community clinics.

The Enduring Importance of Parenting: Caregiving Quality and Fear-Potentiated Startle in Emerging Adults With a Child Maltreatment History

Background: The transition to adulthood is a period of increased risk for emergent psychopathology; emerging adults with a childhood maltreatment history are at risk for poor outcomes. Method: Using a multi-measure, transdisciplinary, cross-sectional design, this study tested whether participant-reported positive parenting, a potential resilience-promoting factor, moderated the association between clinician-rated PTSD symptom severity and a transdiagnostic maladjustment biomarker, fear-potentiated startle (FPS), in a sample of 66 emerging adults ( M years = 18.83, SD = 0.89) with a maltreatment history. We hypothesized that characteristics of effective parenting would moderate the relation between PTSD symptoms and FPS. Results: Results indicated that elevated PTSD, as measured by the CAPS, was associated with a more severe startle reaction. The magnitude of the increase in startle reactivity was moderated by parenting such that those with more positive parenting (Accepting [relative to rejecting]: b = −0.42, p < .001; Psychologically-controlling [relative to autonomy-promoting]: b = 2.96, p = .004) had significantly less reactivity across the task at higher levels of PTSD symptoms. Conclusions: Emerging adults with childhood maltreatment histories, high levels of PTSD symptoms, and who perceive present-day high-quality caregiver support may cope better with novel stressors relative to youth lacking that support, potentially translating to better psychological outcomes.

Effects of Caregiver Interventions for Informal Caregivers of Older Adults With Cognitive Decline

Objectives To identify baseline factors and process factors, which indicate changes that are associated with caregiving confidence improvement attributed to caregiver support. Methods An intervention study using 35 informal caregivers (ICG) of older adults (≥65 years old) with cognitive decline. Recipients of ICGs belonged to the Programs of All Inclusive Care for the Elderly (PACE). Interventions were occupational therapy (OT) support or education about illness and effective caregiving methods, which took place in ICGs’ homes. OT interventions included training to reduce physical strain, and improve time and task organizations, and providing assistive devices). Caregiver confidence was measured using a Visual Analog Scale. Data were divided into two groups: improved confidence and decreased/no-change confidence. Eleven baseline data of care recipients (CRs) and ICGs as well as five process data were analyzed using logistic regression. Results Baseline factors that differentiated the two groups were ICG’s age, caregiving confidence level, and CR’s cognitive status, of which classification accuracy was 94.3%. Only Zarit Buren Interview (ZBI) score was associated with caregiving confidence change, of which classification accuracy was 74.3%. Younger ICGs, lower cognition, and lower caregiving confidence among baseline factors, and improved ZBI among the process factors were associated with improved confidence. Discussion Although our interventions prevented 65.7% of caregivers form declining their caregiving confidence, improving caregiving confidence was difficult while CRs’ cognition continued to decline. However, this positive change was possible even CRs had moderate dementia, on average. Personal interventions may be necessary to improve caregiving confidence and reduce ICG’s burden.