A qualitative study of the processes by which carers of people with dementia derive meaning from caring

Background: Most individuals with dementia live in the community, receiving care from family or lay carers. Carers’ wellbeing, and the quality of the care they provide, partly depends on their ability to derive meaning from caring for someone with dementia. Both carers’ previous relationship with their relative and the caregiving process itself contribute to this sense of meaning. However, it remains unclear why some carers derive meaning from these sources, whereas others do not.

Objective: To further explore the processes by which carers derive a sense of meaning from caring.

Methods: Representative case sampling was used to recruit a purposive sample of 20 carers for individuals living with dementia. In-depth semi-structured interviews were audio-recorded and transcribed, and analysed using pluralist qualitative methodology.

Results: A framework of three sources from which carers derived meaning from caring was identified, encompassing: carers’ perceptions of how ‘right’ or ‘symmetrical’ caring felt in light of their current and previous relationship with the person with dementia; maintenance of a ‘protected’ sense of self within the care relationship; and carers’ perceptions of their ‘social connectedness’ outside the relationships.

Conclusion: Holistic assessment based on this framework could help to tailor individualised provision of support, foster resilience and safeguard carers’ well-being.     

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.     

Perceived control among migrant live-in and local live-out home care workers in Israel

Objective: To examine perceived control among live-in and live-out home care workers and to identify factors that contribute to perceived control among both types of caregiving.

Method: 338 migrant live-in home care workers and 185 local live-out home care workers were asked to report their perceived control. Burnout, satisfaction with the relationship with the care recipient and the care recipient's family, and satisfaction with social relationship were also gathered.

Results: Both types of caregivers reported high levels of perceived control, although live-in home care workers expressed more perceived control. Higher age, higher levels of satisfaction with the relationship with the care recipient and the care recipient's family and lower levels of burnout, predicted perceived control. Satisfaction with social relationship was a stronger predictor of one's perceived control among live-in home care workers.

Conclusions: Promoting social relationships outside the home care context by allowing migrant live-in home care workers to take part in social gatherings is recommended as this can strengthen their sense of perceived control.     

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.     

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.     

Habilitation of very preterm infants at a Post Acute Care Inpatient Rehabilitation (PACIR) center after neonatal intensive care unit (NICU) discharge

Objective: To investigate whether Post-Acute Care Inpatient Rehabilitation (PACIR) admission after NICU stay affects the total length of stay (LOS) of very preterm (VPT: ≤30 weeks of gestation) infants.

Methods: A retrospective case control study of VPT infants d/c’d from the NICU at Maria Fareri Children’s Hospital (MFCH) to either a PACIR (Blythedale Children’s Hospital: BH) for convalescent care (cases) or directly home (controls).

Results: 35 cases and 70 controls. Total LOS (MFCH + BH) was longer for cases [196 vs. 97 days]. At the time of d/c from MFCH, Special Health Care Needs (SHCN) amongst cases were greater than controls, however, became similar at the time of home d/c. The majority of cases achieved habilitation goals at the PACIR.

Conclusions: Although LOS was longer for patients transferred to a PACIR, habilitation at BH Hospital reduced the SHCN at the time of home d/c amongst cases.     

Health professionals’ perceptions of developing dementia services in primary care settings in China: a qualitative study

Objectives: Primary care plays a crucial role in the timely diagnosis and proper management of dementia. Evidence from low and middle income countries is much needed to inform service development in primary care and to address the dementia burden in these countries. The aim of this study was to explore community health professionals’ perceptions of dementia service development using China as a case.

Method: An interpretive study design was utilized and focus groups were used for data collection guided by a semi-structured interview guide. Each focus group lasted between 90–120 min. Thematic analysis was applied for data analysis.

Results: Twenty-one community health professionals participated in this study and three major themes were identified. These themes are: incorporating dementia components in the government-subsidized primary care services; an under-prepared workforce to meet the demand for dementia care; and an enabling environment to sustain dementia care.

Conclusion: Government policies, regulations, standards and guidelines need to be established for dementia service development in primary care to improve the home care for people with dementia and to create a dementia-friendly society. Regular education and training activities for health professionals are a way to build dementia care service capacity in primary care.     

Spiritual care for people with intellectual and developmental disability: An exploratory study

Background: A faith-based (pseudonym, Adam’s House – AH) and a non-faith-based care service (pseudonym, Greenleaves – GL) were explored to find out if and how spiritual support was provided for people with intellectual and developmental disabilities (IDDs).

Method: Six months were spent volunteering within each service and a mixed-methods approach was utilised including applied and ethnographic methods to explore and describe if and how spirituality was embedded within the two services.

Results: Themes found included community of value; homely functional care; and barriers to spiritual care. GL staff tended to provide what we termed “religious spiritual care” while AH staff administered both “religious” and “non-religious” spiritual-based support. This difference may be related to the type of training found only at AH which included spiritual dimensions.

Conclusion: Services could benefit from acknowledging the importance and significance of spiritual care training and education for effective and varied spiritual care for people with IDD who desire such support.     

Unmet care needs,care provision and patient satisfaction in patients with a late life depression: a cross-sectional study

Background: Research has shown that some 30% of total care needs in people with late-life depression (LLD) are unmet. It is not known to what extent patients actually don't receive any care for these needs or consider the care to be insufficient and their satisfaction with the provided care.

Aim: The aim of this study is to obtain insight into the care provided in relation to the reported unmet care needs and satisfaction with the total care provided is examined.

Method: A cross-sectional study of 99 people with LLD in an ambulatory setting.

Results: In 67% of patients, at least one unmet need was ascertained. In most cases (80%) care was actually provided for those needs by professionals and/or informal caregivers. Patients were satisfied with the care delivered for 81% of the reported care needs. Satisfaction was lowest for social care needs (67%). For six specific care needs it was demonstrated that dissatisfied patients were significantly more depressed than satisfied patients.

Conclusion: Even though patients might receive care for certain needs, this does not mean that their needs are met. A substantial proportion of patients with LDD feel that they need additional help for unmet needs.     

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.     

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.     

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.     

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.     

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.     

Physicians’ attitudes when faced with life-threatening events in children with severe neurological disabilities

Purpose: Children with severe neurological disabilities are at an increased risk of acute, life-threatening events. We assessed physicians’ attitudes when making decisions in these situations.

Methods: We surveyed physicians in pediatric intensive care, neurology, and rehabilitation units in Swiss hospitals. The questionnaire explored participants’ attitudes toward life-threatening situations in two scenarios: a child with profound intellectual and multiple disabilities (PIMD) and an infant with spinal muscular atrophy (SMA) type I.

Results: The participation rate was 55% (52/95). There was a consensus favoring non-invasive ventilation and comfort care as well as avoiding tracheostomy and invasive ventilation. For the child with PIMD, 61% of participants opposed cardiopulmonary resuscitation (CPR), 51% for the child with SMA. Physicians with over 20 years of experience were significantly more opposed to providing CPR than less experienced colleagues.

Conclusions: Physicians held different views, influenced by personal factors. This highlights the importance of standardizing multidisciplinary processes toward approaching these complex situations.     

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.     

Mental health care providers talk about their experiences preventing suicide in people with substance use disorders in South Africa: implications for clinical practice

Objective: This study explored mental health care providers’ experiences of preventing suicide in people with substance use disorders and their perceptions of factors related to clinical practice that contributed to these experiences.

Methods: In-depth, semistructured interviews were conducted with 18 mental health care providers working in South Africa. Thematic analysis was used to analyse the data inductively with Atlas.ti software.

Results: Participants described feeling hopeless, helpless, powerless and guilty and needed to debrief from their experiences of preventing suicide. They perceived their experiences to be related to the difficulties of treating substance use disorders, the difficulties of assessing and managing suicide risk and how treating substance use might increase suicide risk.

Conclusions: The ways in which mental health care providers think about suicide and make sense of their experiences affects their perceived abilities to prevent suicide. Educating mental health care providers to transcend the limitations of risk factor approaches to suicide prevention and utilise evidence-based strategies for treating substance use disorders and associated problems, may be important to empower them and make them feel competent in suicide prevention. Empowering people with substance use disorders may help prevent suicide and may require collaboration between mental health care providers and allied professionals.     

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)     

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.