Exploring dimensions of social support and resilience when providing care at the end of life: a qualitative study

Background: Research shows that formal and informal social support can facilitate resilience in carers. There is a paucity of research exploring social support and resilience amongst recently bereaved informal carers.

Aim: To examine how the presence or absence of distinct dimensions of social support facilitate or hinder resilience in recently bereaved informal carers.

Participants: 44 bereaved carers, who had been identified by GP as ‘main carer’ of someone recently deceased (3–12 months), aged between 38 and 87 years old (mean= 67).

Methods: Thematic analysis then the Ecological Framework of Resilience as an organisational tool to develop overarching themes in the data. We used the Sherbourne and Stewart model to identify social support that was lacking as well as social support that was present.

Results: A range of social support types were identified. There was an emphasis on the importance of relationships with both health professionals and family members, including the care recipient. However, social support was not necessary for resilience if the participant had other resources.

Conclusions: Social support for carers providing end of life care is almost exclusively based around end of life care ‘work’. In comparison to other research our study suggests that relationships with family and health professionals are paramount. Multidimensional support is needed for carers to enhance their resilience.     

Perspectives of carers of people with intellectual disability accessing general practice: “I’d travel to the ends of the earth for the right person”⁣

Background: Informal carers often play an integral role in the lives of people with intellectual disability (ID) residing in the community. In this study, we explored the extent to which carers of people with ID believe that the health care needs of the person they care for are being accommodated by general practice.

Method: Semi-structured interviews were conducted with 25 informal carers to people with ID living in Australia.

Results: Carers of people with ID report that they experience considerable barriers to accessing general practice care on behalf of the people they care for.

Conclusions: Given the ever-increasing number of people with ID now living in the community and their vulnerability to health problems, it is imperative that future research focuses on the development of strategies to overcome the barriers identified in this study.     

The role and profile of the informal carer in meeting the needs of people with advancing Parkinson's disease

Background: Many people with Parkinson's disease (PD) (PwP) require care from either informal or formal carers, due to worsening symptoms. Carer strain is a recognised consequence of caring. However there are few data on the role and profile of informal carers and if this impacts on carer strain.

Method: People with moderate to advanced PD, with an informal carer were invited to participate. Data regarding motor and non-motor symptoms of the participant, along with demographics, tasks and duration of caring and health issues of the carer were collected.

Results: One-hundred and fifteen participants and their carer were recruited. Mean carer age was 70.7 years, 66.1% were female caring for a median of 16 hours per day. Over 80% provided help in housework and companionship activities, 63.2% with dressing and 49.1% with feeding. There was a significant relationship between disease stage and level of strain. Participant age, physical and cognitive disability were significantly associated with greater care need. High care need was associated with poor carer quality of life.

Conclusions: The care needs of PwP are considerable. To reduce carer strain and improve quality of life, carers’ needs must be considered to enable them to carry on with their vital role.     

Carer preferences for home support services in later stage dementia

Objectives: To examine the relative importance of different home support attributes from the perspective of carers of people with later-stage dementia.

Method: Preferences from 100 carers, recruited through carers’ organisations, were assessed with a Discrete Choice Experiment (DCE) survey, administered online and by paper questionnaire. Attributes were informed by an evidence synthesis and lay consultations. A conditional logit model was used to estimate preference weights for the attributes within a home support ‘package’.

Results: The most preferred attributes were ‘respite care, available regularly to fit your needs’ (coefficient 1.29, p = < 0.001) and ‘home care provided regularly for as long as needed’ (coefficient 0.93, p = < 0.001). Cost had a significant effect with lower cost packages preferred. Findings were similar regardless of the method of administration, with respite care considered to be the most important attribute for all carers. Carers reported that completing the DCE had been a positive experience; however, feedback was mixed overall.

Conclusions: These carer preferences concur with emerging evidence on home support interventions for dementia. Respite care, home care and training on managing difficulties provided at home are important components. Carers’ preferences revealed the daily challenges of caring for individuals with later stage dementia and the need for tailored and specialised home support.     

Effect of activity-based mirror therapy on lower limb motor-recovery and gait in stroke: A randomised controlled trial

Objective: To determine the effect of activity-based mirror therapy (MT) on motor recovery and gait in chronic poststroke hemiparetic subjects.

Design: A randomised, controlled, assessor-blinded trial.

Setting: Rehabilitation institute.

Participants: Thirty-six chronic poststroke (15.89?±?9.01 months) hemiparetic subjects (age: 46.44?±?7.89 years, 30 men and functional ambulation classification of median level 3).

Interventions: Activity-based MT comprised movements such as ball-rolling, rocker-board, and pedalling. The activities were provided on the less-affected side in front of the mirror while hiding the affected limb. The movement of the less-affected lower limb was projected as over the affected limb. Conventional motor therapy based on neurophysiological approaches was also provided to the experimental group. The control group received only conventional management.

Main outcome measures: Brunnstrom recovery stages (BRS), Fugl-Meyer assessment lower extremity (FMA-LE), Rivermead visual gait assessment (RVGA), and 10-metre walk test (10-MWT).

Results: Postintervention, the experimental group exhibited significant and favourable changes for FMA-LE (mean difference?=?3.29, 95% CI?=?1.23–5.35, p?=?.003) and RVGA (mean difference?=?5.41, 95% CI?=?1.12–9.71, p?=?.015) in comparison to the control group. No considerable changes were observed on 10-MWT.

Conclusions: Activity-based MT facilitates motor recovery of the lower limb as well as reduces gait deviations among chronic poststroke hemiparetic subjects.     

A how-to guide to aphasia services: celebrating Professor Linda Worrall’s contribution to the field

Background: This article recognises Professor Linda Worrall’s contribution to aphasiology and discusses research themes which have grown from her work.

Aims: To review, summarise, and discuss literature relating to four themes which have emerged from the work of Professor Worrall: (1) Research capacity building; (2) Implementation of research evidence in clinical practice; (3) Meaningful outcome measurement; and (4) Improvement of psychological and emotional outcomes.

Main contribution: A review of the literature, with examples of practical applications.

Conclusions: The work of Professor Worrall has greatly influenced the field of aphasia; her legacy is the research capacity she has built in Australia and around the world.     

A Note on the “One Case per Stagger Position” Character of Common Multiple-Baseline Intervention Designs

Purpose: To overcome the constraint of common multiple-baseline designs that only one case per stagger position is permitted.

Methods: Three alternative strategies for assigning more than one case to each stagger position are examined.

Results: The three recommended strategies achieve the objective while maintaining the study’s internal and statistical-conclusion validities.

Conclusions: ExPRT, a freely available Excel-based randomization-test package, can be used to assist in both the design and statistical analysis associated with each of the strategies.     

Views and experiences of care home staff on managing behaviours that challenge in dementia: a national survey in England

Aim: To determine the views of care home (CH) staff in relation to experiencing and managing behaviour that challenges (BtC) in dementia and their experiences of training.

Method: Cross-sectional survey using a self-report questionnaire, distributed to staff employed in a 20% sample of all registered dementia-specialist CHs in England, either by postal or direct distribution.

Results: Questionnaires were returned from 352 care staff (25%), representing 5% of all dementia-specialist CHs, half were CH without nursing. Respondents estimated caring for 14,585 residents, 9,361 with dementia and 5,258 with BtC. 30.2% of residents with dementia were estimated as being prescribed a medicine to control BtC. BtC reported as experienced by most respondents were: shouting (96.6%), verbal aggression (96.3%) and physical aggression (95.7%), with physical aggression viewed as most difficult to manage. Top behaviours experienced every shift were: wandering (77.8%), perseveration (68.2%) and restlessness (68.2%).

Approaches such as assessing residents, knowing them and treating them as individuals, identifying triggers, having time for them and using an appropriate style of communication, were viewed as key to managing BtC, rather than guideline-specific interventions such as massage, aromatherapy and animal-assisted therapy.

Only 38% agreed/strongly agreed medicines were useful to control BtC, which was related to the extent to which they were prescribed. Training was available, but variable in quality with on-line training being least useful and on-the job training most desirable.

Conclusion: BtC are commonly and frequently experienced by care staff, who consider individual approaches, having time and good communication are key to successful management.     

French translation and validation of a fragile X syndrome screening checklist

Background: Fragile X syndrome (FXS) is the most common cause of inherited intellectual disability among men. This syndrome is frequently underdiagnosed in adults. The aim of this study was to develop and validate a French translation of the screening checklist Fragiele-X screeningslijst.

Method: The validation sample for the translated checklist included 22 pairs of men between the ages of 18 and 52, matched by age and degree of intellectual impairment.

Results: The translated checklist achieved coefficients of 0.92 for internal consistency, 0.90 for test-retest reliability and 0.65 for inter-rater reliability. These psychometric properties are commensurate with those of the original checklist.

Conclusion: Therefore, the translated checklist developed in this study can be considered a valid screening instrument for the detection of FXS in men with intellectual disabilities.

Abbreviations: FXS: fragile X syndrome; FMR1: fragile X mental retardation 1 (gene)     

Pharmacogenetics and levodopa induced motor complications

Aim: L-dopa remains the most effective symptomatic therapy for Parkinson's disease (PD) but unfortunately, its chronic use is often associated with motor complications. This review highlights the importance of pharmacogenetics in an individualised PD therapeutic approach.

Material and Methods: review of the literature was done.

Results: PD patients show remarkable heterogeneity in their response to L-dopa and this profound interindividual heterogeneity suggests that there is a genetic predisposition.

Conclusions: The impact of the genetic makeup of every individual on PD treatment appears to be of great importance in order to achieve not only the optimum therapeutic effect, but also with minimal side effects.     

Screening Adherence for Depression Post Stroke: Evaluation of Outpatients,a London Experience (SAD PEOPLE)

Background: Post stroke depression (PSD) is common, and the transition home following discharge may be especially challenging for stroke survivors.

Objectives: This study aimed to determine how well specific Canadian Best Practice Recommendations for PSD screening were adopted within a stroke rehabilitation outpatient clinic before and after the utilization of a standardized clinical form.

Methods: Practices were evaluated through retrospective chart review before and after the implementation of the standardized form which cued physicians to administer the Patient Health Questionnaire 9 (PHQ-9) at the first outpatient visit. Participants included those aged ≥18 years with a primary diagnosis of stroke.

Results: One hundred thirty-five subjects’ charts were reviewed. Form implementation was associated with increased rates of PSD screening (93.8% versus 0%) and charting regarding mood (55.4% versus 15.7%).

Conclusion: This study highlights the frequency of depressive symptoms in an outpatient cohort and demonstrates how screening rates can be improved by using a standardized form. Routine PHQ-9 completion at the first outpatient visit was associated with more physician–patient discussion and documentation regarding mood.     

How to address the needs of non-responders to REACH VA: a qualitative analysis

Objective: This study used qualitative methods to understand how to further alleviate symptoms of depression and caregiver burden and address the needs of non-responders following a course of Resources for Enhancing Alzheimer’s Caregiver Health in VA (REACH VA).

Methods: Semi-structured interviews with caregivers and interventionists post-treatment were coded for themes related to ways to address the needs of non-responder caregivers.

Results: The following suggestions recurred among non-responder caregivers and interventionists: (1) tailor skills and psychoeducation material to caregiver’s needs; (2) provide greater overall support within the realm of caregiving; (3) explore and process caregiver’s emotions around caregiving experience and grief; (4) address interpersonal difficulties and barriers to asking for help; (5) spend more time practicing skills to aid in implementing them at home.

Conclusions: For many non-responders, a longer-term treatment targeting caregivers’ emotional processing, interpersonal skills, social connection, acquisition and implementation of skills is indicated.     

Effects of aging on the myelination of the optic nerve in rats

Aim of the study: Cognitive decline due to aging is most probably the result of changes in the white matter in the central nervous system (CNS) and/or demyelination.

Material and methods: We used electron microscopic analysis of the morphological changes in aging rats’ optic nerves as an easily accessible part of the CNS.

Results: Several age changes were observed in aging rats (36?months) vs. young adult rats (6?months), namely degeneration of axons, decreased packing density and morphological alterations of myelination, including the ballooning of some myelin sheaths, separation of myelin lamellae and degenerative changes in the oligodendrocytes population.

Conclusion: Cognitive decline related to aging may occur in part due to the disturbed myelination of axons in CNS white matter.     

Smell your memories: Positive effect of odor exposure on recent and remote autobiographical memories in Alzheimer’s disease

Introduction: There is a burgeoning interest in the effects of odor exposure on autobiographical memory in Alzheimer’s disease (AD). We pursued this line of research by assessing the effect of odor exposure on the retrieval of recent and remote memories in AD.

Method: Twenty-six patients with mild AD and 28 controls were tested in two conditions: with and without odor exposure. In each condition, participants were invited to retrieve two childhood memories, two adulthood memories, and two recent memories.

Results: Analysis showed that AD patients produced a higher number of and more specific childhood memories, adulthood memories, and recent memories after odor exposure than without odor.

Discussion: These findings demonstrate how odor exposure may alleviate anterograde and retrograde amnesia, at least when considering the ability of patients with mild AD to retrieve few recent or remote memories.     

Dyadic construction of dementia: meta-ethnography and behaviour-process synthesis

Objectives: Good interaction with family caregivers helps maintain positive identity in people with dementia. However, research in this area is limited. We aimed to systematically review the dyadic experience of dementia caring.

Method: We searched on five databases: MedLine, EMBASE, PsycInfo, ASSIA, and CINAHL. Eligible studies employed qualitative or mixed method design, reported the experience of dyads of dementia with no comorbid organic or psychiatric disorders. No restrictions were made on language, year of publication, sex or age of participants. Two independent researchers conducted the quality appraisal of studies. We synthesise data through meta-ethnography and developed a behavioural model to explain dyadic interaction.

Results: Seventeen studies were included in the review. The meta-ethnography generated two third-order constructs: Personal orientation and noises. When people with dementia and their carers have dyadic-oriented goals, their behavioural responses may promote positive interaction. When only one partner has dyadic goals, context-related stress may affect the interaction, because of no perceived shared understanding of the situation.

Conclusion: Our findings suggest that unequal power distribution within dyads, can cause significant stress, when coping strategies are impaired. We discussed implications for family carers, people with dementia, and health professionals deriving from greater understanding of dyadic dynamics to care.     

Social circus program (Cirque du Soleil) promoting social participation of young people living with physical disabilities in transition to adulthood: a qualitative pilot study

Purpose: To explore the perceived impact of a social circus program on the participation level of young adults’ living with physical disabilities from their own and their parents’ perspective.

Method: Exploratory phenomenological qualitative design. A social circus program was offered for nine months. Perceived participation level was documented through pre and post semi-structured interviews. A pretested interview guide was used. Interviews were transcribed and coded by two independent researchers.

Results: The average age of the participants (n = 9) was 20.0 ± 1.4 years with 2/9 being female. Participation was perceived as being improved after the intervention from both perspectives (participants and parents) mainly for communication, mobility, relationships, community life and responsibilities. The intervention was perceived as strengthening self-perception and self-efficacy, which in turn enhanced participation level and decreased parents’ bounding.

Conclusion: The results show promises for social circus as a new approach in adult physical rehabilitation for this population in transition.     

Determinants of playfulness of young children with cerebral palsy

Purpose: To identify child, family, and service determinants of playfulness of young children with cerebral palsy.

Methods: Participants were 429 children, 18–60 months. Children were divided into two groups, Gross Motor Function Classification System levels I-II and III-V. Therapists collected data on body functions and gross motor function; parents provided information about children’s health conditions and adaptive behavior, family life, and services. One year after the beginning of the study, therapists assessed children’s playfulness. Data were analyzed using structural equation modeling.

Results: Higher gross motor function was associated with higher playfulness for both groups. Greater impact of health conditions on daily life was associated with lower playfulness for children in levels I-II. More effective adaptive behavior was associated with higher playfulness, and higher parent perception of therapists’ family-centeredness was associated with lower playfulness for children in levels III-V.

Conclusion: Supporting gross motor function, health, and adaptive behavior may foster playfulness.     

Estimation of skeletal muscle mass in patients with spinocerebellar ataxia type 3 and 10

Background: Neurodegenerative diseases may progress to a level in which patients present spontaneous weight loss, resulting in increased falls and functional disabilities when the disease is associated with muscle mass depletion.

Objective: Evaluate the muscle compartment in patients presenting spinocerebellar ataxia (SCA) type 3 and 10.

Methods: Forty-six patients presenting SCA type 3 and 10 were assessed and 76 volunteers were selected to the control group. In order to evaluate the muscle compartment, muscle mass anthropometric measurements were assessed and total skeletal muscle mass calculated through a predictive equation.

Results: Women with SCA3 presented greater weight loss and muscle mass reduction compared to those with SCA10 and the control group. Among the predictive measurements, calf muscle circumference showed a more significant correlation with total skeletal muscle mass (p = 0.718).

Conclusion: Patients presenting both types of ataxia did not show severe depletion in their nutritional status; however, those with SCA3 displayed greater weight loss and muscle mass reduction compared to the SCA10 group.     

Language mixing patterns in a bilingual individual with non-fluent aphasia

Background: Language mixing in bilingual speakers with aphasia has been reported in a number of research studies, but the reasons for the mixing and whether it reflects typical or atypical behaviour has been a matter of debate.

Aims: In this study, we tested the hypothesis that language mixing behaviour in bilingual aphasia reflects lexical retrieval difficulty.

Methods & procedures: We recruited a Hebrew-English bilingual participant with mild-moderate non-fluent agrammatic aphasia and assessed his languages at three timepoints. We analysed the participant’s Hebrew and English production for retrieval during single-word naming, sentences, and discourse, and identified all instances of language mixing.

Outcomes & Results: We found that there was a greater frequency of language mixing during production of more difficult lexical items, namely the post-morbidly less proficient language (compared to the more proficient language), function words (compared to content words), and single-word naming (compared to retrieval in the context of connected speech tasks), but not for verbs (compared to nouns).

Conclusions: In this bilingual participant with non-fluent aphasia, language mixing behaviour closely resembles lexical retrieval difficulty. Thus, we suggest that bilingual speakers with aphasia may mix their languages as a strategy to maximise communication.     

Awareness and current knowledge of Parkinson’s disease: a neurodegenerative disorder

Context: Parkinson’s disease (PD) is the second common progressive neurodegenerative disease, distressing older men and is prevalent Worldwide.

Objectives: This article is aimed to review the epidemiology, etiology, pathogenesis, clinical manifestation, diagnosis and management of PD.

Methods: A google search was performed to recognise studies that review the characteristics of PD. Search terms included ‘Parkinson’s disease’, ‘epidemiology’, ‘etiology’, ‘pathogenesis’, ‘clinical manifestations’, ‘diagnosis’ and ‘management of Parkinson disease’.

Results: PD is linked to factors such as environmental chemicals, aging, family history and pesticide exposure such as the use of synthetic heroin. PD is characterised clinically by tremors at rest, postural instability, expressionless countenance, lead pipe rigidity and less commonly cognitive impairment. After 60 years of age, PD is commonly prevalent in 1–% of the population, no racial differences are apparent, but the prevalence of PD is more common in men than women. There has also been a better understanding that the disorder may be linked with major non-motor trouble in addition to the additional generally recognised motor complications. There are various management options for the timely management of PD. As the ailment advances, further management strategies are existing; however, the management of non-motor manifestations and late stage motor complications remains mainly testing and will advantage from additional clinical studies.

Conclusions: In this article, we have discussed current progress in the understanding of the epidemiology, clinical manifestations, pathogenesis and management strategies of the disease.