Understanding Caregiver Strain in Parkinsonism-A Mixed Methods Approach.

BACKGROUND: Parkinsonism, including Parkinson's disease (PD) are progressive neurological conditions. As these condition progress, individuals will need more support with their care needs to maintain independent community-living. Care needs are mainly met by unpaid, informal caregivers, usually close family members or friends. Caregiver strain is thought to lead to the need for care home placement when the caregiver can no longer cope. OBJECTIVE: To understand predictors of caregiver strain and its influence on care home placement for people with moderate to advanced Parkinsonism. METHODS: This is a convergent mixed methods study. Quantitative data, following an adapted stress-appraisal model, were collected on caregiver profile, tasks performed and causes of caregiver strain. Semi-structured, in-depth interviews were conducted with caregivers of people with PD (PwP) who went into a care home during the study period, to develop a deeper understanding of the caregiver role and the factors influencing caregiver strain. RESULTS: Quantitative data were collected from 115 patient caregiver dyads. Interviews were conducted with 10 caregivers. A model to predict caregiver strain was developed and predictors of caregiver strain were identified, such as functional disability and poor caregiver sleep. CONCLUSION: Our findings further demonstrate the complexity of carer strain. Particular dimensions are identified that need to be addressed within clinical practice to reduce carer strain and support people with Parkinsonism to remain within their own home for as long as possible.

Driving and Parkinson's Disease: A Survey of the Patient's Perspective.

BACKGROUND: Parkinson's disease (PD) is a multi-system disorder that can impact on driving ability. Little is known about how these changes in driving ability affect people with PD, making it difficult for clinicians and carers to offer appropriate support. OBJECTIVE: To assess patient views concerning the effect of PD on their driving ability, the impact of these changes and how they manage them. METHOD: An online survey was created by a team of clinicians, people with PD, their carers, and representatives from Parkinson's UK. People with PD throughout the United Kingdom were invited to participate through Parkinson's UK's website, newsletter and Parkinson's Excellence Network email list. RESULTS: 805 people with PD took part in the survey. We found that the loss of a driving licence had an adverse impact on employment, socialisation, travel costs and spontaneous lifestyle choices. Multiple changes in driving ability related to PD were described, including that impulse control disorders can have an adverse impact on driving. Changes in driving ability caused people to change their driving practices including taking shorter journeys and being less likely to drive at night. Participants advised managing changes in driving ability through planning, vehicle adaptions, maintaining skills and self-assessment. CONCLUSION: This study demonstrates the impact that changes in driving ability can have on the lifestyle of people with PD and reveals the strategies that individuals adopt to manage these changes.

What Predicts Hospital Admissions in Community-Dwelling People With Parkinsonism?

OBJECTIVES: Previous studies have looked at the reasons for hospital admission in people with parkinsonism (PwP), yet few have looked at factors that precipitate admission. METHODS: People with parkinsonism with a diagnosis of idiopathic Parkinson disease of Hoehn and Yahr stage III-V and those with Parkinson plus syndromes were assessed for motor and nonmotor symptoms, quality of life, and functional performance. Logistic regression was used to investigate predictors of hospital admission over the subsequent 2 years. RESULTS: Overall, 162 patients consented to be part of the study. Seventy-one PwP (43.8%) had at least 1 hospital admission, and 17 (10.5%) patients had 3 or more admissions to hospital. Poorer cognition, more nonmotor symptoms, poorer quality of life, slower timed-up-and-go test scores, and abnormal swallow predicted a subsequent hospital admission. DISCUSSION: Our study emphasizes the importance of nonmotor symptoms in predicting admission. A cost-benefit analysis of early intervention to prevent admission should be considered.

Behavioural activation treatment for depression in individuals with neurological conditions: a systematic review.

OBJECTIVE: To evaluate the effectiveness of behavioural activation interventions for people with neurological conditions with comorbid depression, and explore content and adaptations. DATA SOURCES: PsycINFO, MEDLINE, CINAHL, AMED, and EMBASE databases were searched on the 19 November 2019. Reference lists of selected full-texts were screened by title. REVIEW METHODS: We included peer-reviewed studies published in English that used behavioural activation for treatment of depression in adults with a neurological condition. Single-case reports, reviews, and grey literature were excluded. Methodological quality was assessed by two authors independently, and quality was appraised using Critical Appraisal Skills Programme checklists. RESULTS: From 2714 citations, 10 articles were included comprising 590 participants. Behavioural activation was used to treat depression in people with dementia (n = 4), stroke (n = 3), epilepsy (n = 1), Parkinson's disease (n = 1), and brain injury (n = 1). Sample size ranged from 4 to 105 participants. There were seven randomized controlled studies; however, no studies compared behavioural activation to an alternative psychological therapy. The effect sizes varied between small and large in the studies where effect size could be calculated (d = 0.24-1.7). Methodological quality of the included studies was variable. Intervention components were identifying and engaging in pleasurable activities, psychoeducation, and problem-solving. Adaptations included delivering sessions via telephone, delivering interventions via primary caregivers, and giving psychoeducation to caregivers. CONCLUSION: The effectiveness of behavioural activation in randomized controlled trials varied from small to large (d = 0.24-1.7) in reducing depression. The content of behavioural activation was comparable to established treatment manuals. Adaptations appeared to support individuals to engage in therapy. REVIEW REGISTRATION: PROSPERO 2018, CRD42018102604.

Comparing the influence of exercise intensity on brain-derived neurotrophic factor serum levels in people with Parkinson's disease: a pilot study.

INTRODUCTION: Endogenous brain-derived neurotrophic factor (BDNF) is thought to be protective against the neurodegeneration seen in Parkinson's disease (PD), and is thought to increase during exercise. This has been proposed as a possible mechanism by which exercise improves outcomes for people with PD. We conducted a pilot study to investigate the role of exercise intensity on BDNF levels in people with PD. METHODS: Participants of early- to mid-stage disease were recruited from a single PD service in north-east England, UK into two separate studies of exercise in PD, one involving moderate-intensity continuous training (MICT) and one involving high-intensity interval training (HIIT), both had control groups. In both the interventions, participants exercise three times per week for 12 weeks. Blood samples were taken for BDNF analysis at the start and end of the first session and the start and end of the final session, with corresponding samples taken in controls. RESULTS: Data were available for 27 participants (13 intervention, 14 control) in the MICT intervention and 17 (9 intervention, 8 control) in the HIIT intervention. BDNF level did not rise significantly from the start to end of individual sessions. Across the 12 week period, they rose significantly in the HIIT intervention group, but not in controls or the MICT intervention group. CONCLUSIONS: High-intensity interval training appears to have a greater impact on BDNF than MICT. Future work should directly compare exercise modalities and investigate the impact of BDNF levels on disease progression and quality of life.

Conceptualization of depression amongst older adults in rural Tanzania: a qualitative study.

BACKGROUND: Depression in older people is likely to become a growing global health problem with aging populations. Significant cultural variation exists in beliefs about depression (terminology, symptomatology, and treatments) but data from sub-Saharan Africa are minimal. Low-resource interventions for depression have been effective in low-income settings but cannot be utilized without accurate diagnosis. This study aimed to achieve a shared understanding of depression in Tanzania in older people. METHODS: Using a qualitative design, focus groups were conducted with participants aged 60 and over. Participants from rural villages of Kilimanjaro, Tanzania, were selected via randomized sampling using census data. Topic guides were developed including locally developed case vignettes. Transcripts were translated into English from Swahili and thematic analysis conducted. FINDINGS: Ten focus groups were held with 81 participants. Three main themes were developed: a) conceptualization of depression by older people and differentiation from other related conditions ("too many thoughts," cognitive symptoms, affective and biological symptoms, wish to die, somatic symptoms, and its difference to other concepts); b) the causes of depression (inability to work, loss of physical strength and independence, lack of resources, family difficulties, chronic disease); c) management of depression (love and comfort, advice, spiritual support, providing help, medical help). CONCLUSIONS: This research expands our understanding of how depression presents in older Tanzanians and provides information about lay beliefs regarding causes and management options. This may allow development of culturally specific screening tools for depression that, in turn, increase diagnosis rates, support accurate diagnosis, improve service use, and reduce stigma.

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.

The Pattern of Hospital Admissions Prior to Care Home Placement in People With Parkinson's Disease: Evidence of a Period of Crisis for Patients and Carers.

Objectives: We hypothesized that the number and length of hospital admissions in people with Parkinson's disease (PD) would increase immediately prior to admission to a care home relative to those who were able to continue living at home or who died. Method: PD patients at Hoehn and Yahr Stages III to V were followed-up over two and a half years with deaths and care home placements recorded. Hospital admissions data were collected over this period. Results: Of 286 patients included in the study, 7.3% entered a care home and 28.3% died. In the final 120 days prior to the study exit point (care home placement, death, or continued living at home), longer hospital stay was significantly associated with care home placement, after adjusting for the competing risk of death. Conclusion: Our data provide evidence that, for many people with PD, a period of crisis is reached immediately prior to care home placement.

High-intensity interval training in people with Parkinson's disease: a randomized, controlled feasibility trial.

OBJECTIVES:: To investigate whether people with Parkinson's disease can exercise at a high-intensity across a 12-week intervention and to assess the impact of the intervention on cardiorespiratory fitness. DESIGN:: This is a randomized, controlled, feasibility study with waiting list control. Assessors were blinded to group allocation. SETTING:: The intervention took place at an exercise centre and assessments at a district general hospital. SUBJECTS:: This study included 20 people with idiopathic Parkinson's disease. INTERVENTION:: A total of 36 exercise sessions over 12 weeks, with each session lasting ~45 minutes, were conducted. MAIN MEASURES:: The main measures were maximal heart rates achieved during exercise, recruitment rate, attendance, drop-out, change in peak oxygen consumption, cardiac output, cognitive function and quality of life. The study was considered technically feasible if participants achieved ⩾85% of maximal heart rate during exercise. RESULTS:: There were 12 male and 8 female participants; they had a mean age of 68.5 years (standard deviation 6.825). Two participants were of Hoehn and Yahr stage I, 11 stage II and 7 stage III. In all, 17 participants completed the intervention. The median (interquartile range) proportion of repetitions delivered across the intervention which met our high-intensity criterion was 80% (67% to 84%). Mean peak heart rate was 88.8% of maximal. Peak oxygen consumption increased by 2.8 mL kg-1 min-1 in the intervention group and 1.5 mL kg-1 min-1 in the control group after 12 weeks of exercise. We estimate that a fully powered randomized controlled trial would require 30 participants per group. CONCLUSION:: High-intensity interval exercise is feasible in people with Parkinson's disease. Improvements in cardiorespiratory function are promising.

Understanding the Care Needs and Profile of People Living at Home With Moderate to Advanced Stage Parkinson Disease.

BACKGROUND: In the United Kingdom, people with Parkinson disease (PD) and atypical parkinsonism will require more support with their care needs as the condition progresses. There are few data on the nature of care input required and the amount of informal and formal care needed by people with PD to enable them to remain within their own home. METHOD: All people with moderate to advanced stage (Hoehn and Yahr III-V) idiopathic PD and atypical parkinsonism under the care of the Northumbria Healthcare NHS Foundation Trust PD service and living in their own home were invited to take part in The Northumbria Care Needs Project, a 10-year prospective longitudinal study. At baseline, data regarding formal (paid) personal and domestic care input and use of respite care, sitting services, and day centers were collected. We also collected data on patient cognitive disability, functional disability, and disease severity and informal carer tasks. RESULTS: Of 162 people with PD included in the study, only 25.2% accessed formal domestic care and the same proportion formal personal care. In contrast, 80.2% identified an informal carer who helped with these tasks. Despite greater level of functional disability in those with an informal carer, levels of formal personal care input were similar to those with and without a formal carer. Levels of formal domestic carer input were higher in those without an informal carer. CONCLUSIONS: Use of formal care services was relatively uncommon in our cohort and much of the burden of caring appears to be being met by informal carers.

"We never speak about death." Healthcare professionals' views on palliative care for inpatients in Tanzania: A qualitative study.

ABSTRACTObjective:Little is known about the current views and practices of healthcare professionals (HCPs) in Sub-Saharan Africa (SSA) regarding delivery of hospital palliative care. The present qualitative study explored the views of nursing staff and medical professionals on providing palliative and end-of-life care (EoLC) to hospital inpatients in Tanzania. METHOD: Focus group discussions were conducted with a purposive sample of HCPs working on the medical and pediatric wards of the Kilimanjaro Christian Medical Centre, a tertiary referral hospital in northern Tanzania. Transcriptions were coded using a thematic approach. RESULTS: In total, 32 healthcare workers were interviewed via 7 focus group discussions and 1 semistructured interview. Four major themes were identified. First, HCPs held strong views on what factors were important to enable individuals with a life-limiting diagnosis to live and die well. Arriving at a state of "acceptance" was the ultimate goal; however, they acknowledged that they often fell short of achieving this for inpatients. Thus, the second theme involved identifying the "barriers" to delivering palliative care in hospital. Another important factor identified was difficulty with complex communications, particularly "breaking bad news," the third theme. Fourth, participants were divided about their personal preferences for "place of EoLC," but all emphasized the benefits of the hospital setting so as to enable better symptom control. SIGNIFICANCE OF RESULTS: Despite the fact that all the HCPs interviewed were regularly involved in providing palliative and EoLC, they had received limited formal training in its provision, although they identified such training as a universal requirement. This training gap is likely to be present across much of SSA. Palliative care training, particularly in terms of communication skills, should be comprehensively integrated within undergraduate and postgraduate education. Research is needed to develop culturally appropriate curricula to equip HCPs to manage the complex communication challenges that occur in caring for a diverse inpatient group with palliative care needs.

The role of traditional and faith healers in the treatment of dementia in Tanzania and the potential for collaboration with allopathic healthcare services.

Background: Low diagnostic rates are a barrier to improving care for the growing number of people with dementia in sub-Saharan Africa. Many people with dementia are thought to visit traditional healers (THs) and Christian faith healers (FHs) and these groups may have a role in identifying people with dementia. We aimed to explore the practice and attitudes of these healers regarding dementia in rural Tanzania and investigate attitudes of their patients and their patients' carers. Methods: This was a qualitative study conducted in Hai district, Tanzania. Semi-structured interviews were conducted with a convenience sample of THs and FHs and a purposive-stratified sample of people with dementia and their carers. Interview guides were devised which included case vignettes. Transcripts of interviews were subject to thematic analysis. Findings: Eleven THs, 10 FHs, 18 people with dementia and 17 carers were recruited. Three themes emerged: (i) conceptualisation of dementia by healers as a normal part of the ageing process and no recognition of dementia as a specific condition; (ii) people with dementia and carer reasons for seeking help and experiences of treatment and the role of prayers, plants and witchcraft in diagnosis and treatment; (iii) willingness to collaborate with allopathic healthcare services. FHs and people with dementia expressed concerns about any collaboration with THs. Conclusions: Although THs and FHs do not appear to view dementia as a specific disease, they may provide a means of identifying people with dementia in this setting.

Clinical assessments and care interventions to promote oral hydration amongst older patients: a narrative systematic review.

BACKGROUND: Older patients in hospital may be unable to maintain hydration by drinking, leading to intravenous fluid replacement, complications and a longer length of stay. We undertook a systematic review to describe clinical assessment tools which identify patients at risk of insufficient oral fluid intake and the impact of simple interventions to promote drinking, in hospital and care home settings. METHOD: MEDLINE, CINAHL, and EMBASE databases and two internet search engines (Google and Google Scholar) were examined. Articles were included when the main focus was use of a hydration/dehydration risk assessment in an adult population with/without a care intervention to promote oral hydration in hospitals or care homes. Reviews which used findings to develop new assessments were also included. Single case reports, laboratory results only, single technology assessments or non-oral fluid replacement in patients who were already dehydrated were excluded. Interventions where nutritional intake was the primary focus with a hydration component were also excluded. Identified articles were screened for relevance and quality before a narrative synthesis. No statistical analysis was planned. RESULTS: From 3973 citations, 23 articles were included. Rather than prevention of poor oral intake, most focused upon identification of patients already in negative fluid balance using information from the history, patient inspection and urinalysis. Nine formal hydration assessments were identified, five of which had an accompanying intervention/ care protocol, and there were no RCT or large observational studies. Interventions to provide extra opportunities to drink such as prompts, preference elicitation and routine beverage carts appeared to support hydration maintenance, further research is required. Despite a lack of knowledge of fluid requirements and dehydration risk factors amongst staff, there was no strong evidence that increasing awareness alone would be beneficial for patients. CONCLUSION: Despite descriptions of features associated with dehydration, there is insufficient evidence to recommend a specific clinical assessment which could identify older persons at risk of poor oral fluid intake; however there is evidence to support simple care interventions which promote drinking particularly for individuals with cognitive impairment. TRIAL REGISTRATION: PROSPERO 2014:CRD42014015178.

Medication use in people with late stage Parkinson's disease and parkinsonism living at home and in institutional care in north-east England: A balance of symptoms and side-effects?

BACKGROUND: People with Parkinson's disease (PD) and parkinsonism living in care homes (residential or nursing care) in the UK represent around 10-15% of all people with PD and 3-5% of all care home residents. There are few previous data on medication use in those living in care homes with PD. In this study we aimed to compare medication use in a representative cohort of people with PD living in care homes in north-east England with those living in their own homes. METHOD: All people with late stage (Hoehn and Yahr III-V) idiopathic PD, PD dementia, or atypical parkinsonian syndromes under the care of the Northumbria Healthcare NHS Foundation Trust PD service on 1st January 2015 were identified. Demographic, disease characteristics and medication use data were collected from an audit of medical notes of all those identified. RESULTS: We identified 377 people who met the inclusion criteria, 91 (24.1%) of whom were living in a care home. Disease stage, age and age at disease onset were all significantly higher and levodopa equivalent dose significantly lower in those living in care homes, although disease duration and levodopa dose were not. Greater age, lower levodopa equivalent dose and higher disease stage were independently associated with being in a care home. CONCLUSIONS: Although people in care homes had more advanced disease, they were on a significantly lower levodopa equivalent dose. This is likely to be due to the requirement to balance symptom management with drug side-effects.