Initiating activities of daily living contributes to well‐being in people with dementia and their carers

Objective

Problems with everyday functioning are linked to reduced well‐being in people with dementia (PwD) and their carers. However, previous research has almost solely investigated the performance of everyday activities, and global functioning without analysing individual activities. This study explored how deficits in initiating and performing individual activities were associated with carer burden and poorer quality of life of carers and PwD.

Methods

Carers of people with mild dementia were recruited via 10 National Health Service Trusts, as well as through attending six carer support groups. Carers were asked to complete the revised Interview for Deteriorations in Daily Living Activities in Dementia 2 (R‐IDDD2), and measures on carer burden, well‐being, and person with dementia well‐being. Data were analysed using correlation analysis.

Results

Two hundred and seventy‐two carers completed the R‐IDDD2. Carers were grouped into those with low or high ratings of well‐being based on the mean scores. All but three activities on the initiative and/or performance scale were significantly associated with carer burden and carer and PwD quality of life. Engaging in hobbies and maintaining an active social life were most strongly associated with carer and PwD well‐being. Initiating computer use, driving, and medication management were not related to carer burden.

Conclusions

Findings from this study can have direct implications for improving care management early in the disease. Post‐diagnostic support needs to provide more opportunities for PwD, and their carers, to engage in social groups, whilst interventions targeted at living well with dementia need to particularly improve the initiative of engaging in individual hobbies. Copyright © 2017 John Wiley & Sons, Ltd.     

Severity of mild cognitive impairment in early Parkinson's disease contributes to poorer quality of life

BackgroundPoor quality of life (QoL) is a feature of people with Parkinson's disease (PD) who develop dementia. The relationship between mild cognitive impairment in PD (PD-MCI) and QoL is less clear. To address this, we studied the impact of varying severities of cognitive impairment on QoL in a cohort of non-demented patients with early PD.MethodPatients with newly diagnosed PD (n = 219) and age and sex matched healthy controls (n = 99) completed a schedule of neuropsychological tests, in addition to scales assessing QoL (PDQ-39), depression, sleep, neuropsychiatric symptoms and a clinical examination. The Movement Disorder Society criteria were used to define and classify PD-MCI.ResultsParticipants with PD-MCI were significantly older than those with normal cognition, had more severe motor symptoms, scored higher for depression and had poorer quality of life. Logistic regression showed that mild cognitive impairment, independent of other factors, was an indicator of poorer QoL. Using cognitive performance 2.0 standard deviations (SD) below normative data as a cut-off to define PD-MCI, there was a significant difference in QoL scores between patients with PD-MCI and those classified as having normal cognition. Subjects with less severe mild cognitive impairment did not exhibit significant differences in QoL.ConclusionsPD-MCI is a significant, independent factor contributing to poorer QoL in patients with newly diagnosed PD. Those classified with greatest impairment (2.0 SD below normal values) have lower QoL. This has implications for clinical practice and future interventions targeting cognitive impairments.     

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.     

Cognitive decline and quality of life in incident Parkinson's disease: The role of attention

IntroductionParkinson's disease dementia (PDD) is associated with poorer quality of life (QoL). Prior to the onset of PDD, many patients experience progressive cognitive impairment. There is a paucity of longitudinal studies investigating the effects of cognitive decline on QoL. This study aimed to determine the longitudinal impact of cognitive change on QoL in an incident PD cohort.MethodsRecently diagnosed patients with PD (n = 212) completed a schedule of neuropsychological assessments and QoL measures; these were repeated after 18 (n = 190) and 36 months (n = 158). Mild cognitive impairment (PD-MCI) was classified with reference to the Movement Disorder Society criteria. Principal component analysis was used to reduce 10 neuropsychological tests to three cognitive factors: attention, memory/executive function, and global cognition.ResultsBaseline PD-MCI was a significant contributor to QoL (β = 0.2, p < 0.01). For those subjects (9%) who developed dementia, cognitive function had a much greater impact on QoL (β = 10.3, p < 0.05). Multivariate modelling showed attentional deficits had the strongest predictive power (β = −2.3, p < 0.01); brief global tests only modestly predicted decline in QoL (β = −0.4, p < 0.01).ConclusionsPD-MCI was associated with poorer QoL over three years follow up. Cognitive impairment had a greater impact on QoL in individuals who developed dementia over follow-up. Impaired attention was a significant determinant of QoL in PD. Interventions which improve concentration and attention in those with PD could potentially improve QoL.     

Comparaison de la qualité de vie de patients atteints d’atrophie multisystématisée et de maladie de Parkinson

Purpose

Quality of life (QoL) in multiple system atrophy (MSA) is thought to be poorer than in Parkinson's disease (PD), primarily because of motor impairment, autonomic dysfunction and depression. The aim of the study was to investigate QoL in 10 patients with probable MSA (parkinsonian subtype) compared with 10 PD patients matched for motor disability on UPDRS III motor score.

Methods

All patients were ambulatory and non-demented. Mean durations of disease in MSA and PD patients were respectively 3.6 and 9.0 years. QoL was assessed using the SF-36 health-related questionnaire and a life satisfaction visual analogue scale. Patients were also evaluated for cognitive function (Mattis Dementia Rating Scale [Mattis DRS], Wisconsin Card Sorting Test [WCST], Stroop, Fluencies), depression (Beck Depression Inventory-II [BDI-II]), apathy (Modified Apathy Evaluation Scale) and were screened for non-motor symptoms (NMS Quest).

Results

The only difference in QoL between MSA and PD patients matched for motor disability was that the SF-36 vitality subscore was more impaired in MSA and negatively correlated with interference index on Stroop word colour testing. Depression and non-motor symptoms were associated with poorer QoL in both groups. Among MSA patients, cognitive impairment (Stroop interference index) and apathy also had a negative impact.

Conclusion

There was no major difference in QoL between MSA and PD patients matched for motor disability with a disease duration about 5 years longer. The SF-36 vitality subscore was more impaired in MSA and associated with interference sensitivity.     

Quality of life and depression in carers of patients with early onset dementia

Objective: To investigate the quality of life (QoL) and depression and its correlates in carers living with early onset dementia (EOD) patients.

Method: The subjects were 49 carers, either married to or cohabiting with EOD patients, 38 with Alzheimer's disease and 11 with other types of dementia. The Quality of Life – Alzheimer Disease scale (QoL-AD) and Geriatric Depression Scale – 15 items (GDS-15) were used.

Results: The mean QoL score for the carers was 37.9 (SD 5.5) and the mean GDS-15 score 5.1 (SD 2.9). Linear regression analyses with QoL and GDS-15 score as dependent variables were performed. Increased age of the carer (B?=?0.32) and greater insight of the patients (B?=??0.186) were significantly associated with a better QoL for the carer. Being married (B?=?2.10), having children together with the patient (B?=?1.61) and being the carer of a patient with cardiovascular disease (B?=?2.28) were associated significantly with a higher GDS-15 score, whereas being the carer of a patient who received domiciliary nursing care (B?=??2.29) was significantly associated with a lower GDS-15 score.

Conclusion: The QoL for carers of EOD patients corresponds positively with the increased age of carers and with patients’ insight into their condition. Increased depressive symptomatology in carers was associated with being married, having offspring and caring for a patient with dementia and a co-morbid cardiovascular disease. A reduction in depression was seen in carers when the patients received domiciliary nursing care.     

Can you detect early dementia from an email? A proof of principle study of daily computer use to detect cognitive and functional decline

Objective

To determine whether multiple computer use behaviours can distinguish between cognitively healthy older adults and those in the early stages of cognitive decline, and to investigate whether these behaviours are associated with cognitive and functional ability.

Methods

Older adults with cognitive impairment (n = 20) and healthy controls (n = 24) completed assessments of cognitive and functional abilities and a series of semi‐directed computer tasks. Computer use behaviours were captured passively using bespoke software.

Results

The profile of computer use behaviours was significantly different in cognitively impaired compared with cognitively healthy control participants including more frequent pauses, slower typing, and a higher proportion of mouse clicks. These behaviours were significantly associated with performance on cognitive and functional assessments, in particular, those related to memory.

Conclusion

Unobtrusively capturing computer use behaviours offers the potential for early detection of neurodegeneration in non‐clinical settings, which could enable timely interventions to ultimately improve long‐term outcomes.     

CARERS AND THE MONITORING OF PSYCHOGERIATRIC COMMUNITY TEAMS

Objective: To monitor key processes and outcomes in joint health and social services community psychogeriatric teams, from the perspective of principal carers of people with dementia. Design: Interview with carers six months after referral of the 39 community based people with dementia. Overall 34 (87%) principal carers volunteered but 5 refused follow-up. Setting: Two rural and two urban health and social services teams. All were routine service teams, rather than run for research purposes. District had relatively large long stay inpatient facility but low independent sector provision. Main outcome measures: Measures included avoidable admissions, crises or untoward events, unmet needs, proportion of carers experiencing severe stress assessed on the General Health Questionnaire, the carer satisfaction with service elements. Also comparison of carer and keyworker assessments of carer stress. Results: The majority of patients were female and few were under 75 years old. 93% were severely or totally impaired on the Activities of Daily Living problem score. The principal carers were mostly spouses or children, 56% being female. During the six month period from referral, keyworkers considered that there were 2 avoidable admissions and crisis or untoward events in 18 cases, the largest group being accidents (7). Carers considered needs to be met in 44% of cases. Lack of patient stimulation and carer respite, together with needs for appropriate institutional care, formed the major areas of unmet need. Fifteen of 26 (58%) carers completing the General Health Questionnaire had scores indicating the probable or definite presence of psychological distress. However, keyworker assessments of carer stress showed no correlation with GHQ scores. Fourteen of 32 (43%) considered the services received as of poor or moderate quality. Accounts of problems in arranging and using services highlighted a series of issues requiring management of policy attention. Conclusions: Carer inclusion in the monitoring of joint agency teams is feasible and leads to the identification of a range of practical problems in service configuration and delivery. Keyworker assessments of carer stress may not be valid and direct measurement may be necessary.     

Validation of the Spanish version of the QoL-AD Scale in alzheimer disease patients, their carers, and health professionals

Background

Quality of life (QOL) is becoming increasingly important to measure the effect of interventions on the life of patients with Alzheimer's disease (AD), particularly on the most meaningful issues. However, most of the instruments used to measure QOL have not been validated in the Spanish population. The aim of this study was to determine the psychometric properties of a Spanish version of QoL Scale in patients with AD, carers and health professionals.

Material and methods

On hundred and two patients, their carers and 25 health professionals were recruited from day centres. Patients’ QOL was rated by patients, carers and health professionals. The Health Utilities Index, Clinical Insight Rating Scale and Mini Mental State Examination were also administered.

Results

The internal and external reliability of QoL-AD were excellent. Criterion validity was indicated by a significant correlation of QoL-AD scores with HUI-3 and QoL-AD global item scores (p < .05). Lack of insight and cognitive impairment did not have an effect on these properties. QoL-AD scores were not significantly different between groups made according sociodemographic characteristics and cognitive impairment (p > .05). The exploratory factor analysis result revealed a three factor solution, which accounted for 61.3% of variance: health factor, functional status factor, and social relationship-environment factor.

Conclusions

QoL-AD Scale has proved to be a valid and reliable instrument to measure QoL of Spanish AD patients with mild-to-moderate cognitive impairment and a wide range of anosognosia.     

A longitudinal examination of burden and psychological distress in carers of people with an eating disorder

Purpose

Eating disorders are chronic conditions that require ongoing, high level care. Despite the chronic nature of eating disorders, to date, previous research examining eating disorder carer burden and psychological distress has been cross-sectional only. Therefore, the current study aimed to conduct a preliminary longitudinal examination of the predictors of carer burden and psychological distress for carers of those with an eating disorder.

Methods

A self-report, quantitative questionnaire approach was utilised. Forty-two carers completed three self-report questionnaires over a period of 9 months (initial, 4½ and 9 months) assessing carer burden, psychological distress, carer needs, expressed emotion, coping strategies and social support.

Results

Maladaptive coping, expressed emotion and carer needs were significant longitudinal predictors of carer burden. Carer psychological distress could not be predicted longitudinally.

Conclusions

In order to reduce carer burden, interventions should test whether reducing maladaptive coping strategies, expressed emotion and addressing carer needs lead to lower carer burden and distress.     

Health-related quality of life in patients with progressive supranuclear palsy.

We assessed health-related quality of life (QoL) of patients with progressive supranuclear palsy (PSP), identified the most important QoL issues in patients with this disorder, and assessed the usefulness of existing QoL measures in patients with PSP. Twenty-seven patients in all stages of PSP and their carers underwent a semistructured in-depth interview on the impact of PSP and a neurological examination. They were also asked to complete existing measures of QoL and depression. An item-pool of issues relevant to QoL of patients with PSP was created from the patient and carer interviews. Carers and patients largely agreed on issues relevant for patients' QoL but more carers than patients considered symptoms of frontal lobe dysfunction as problematic for the patients. There was no association of QoL with age and gender, as assessed in interviews and on two QoL instruments. QoL deteriorated with increasing disease duration and severity and greater cognitive impairment and was associated with worse depression scores. While the generic SF-36 was not found to be useful to assess QoL in PSP, feasibility and validity for the PDQ-39 and the EQ-5D were acceptable in this study. However, additional issues relevant to patients with PSP that were not addressed in these instruments included visual disturbances, dysarthria, dysphagia, muddled thinking, confusion, and apathy. The generic EQ-5D and the Parkinson's disease-specific PDQ-39 are useful instruments to assess QoL in patients with PSP. However, they lack questions on important aspects of QoL in PSP that were reported by patients and carers in semistructured interviews. The item pool created in these interviews provides the basis for the development of disease-specific QoL instruments for patients with PSP.     

Prevalence and Clinical Aspects of Mild Cognitive Impairment in Parkinson's Disease: A Meta-Analysis

Mild cognitive impairment associated with Parkinson's disease (PD) is a risk factor for the development of dementia. Despite the importance of early identification of mild cognitive impairment in PD, its prevalence and clinical correlates are still debated. The present meta-analysis provides a robust estimate of prevalence rate of mild cognitive impairment in PD according to the Movement Disorder Society clinical criteria and to explore the differences between PD patients with and without mild cognitive impairment in demographic, clinical, and neuropsychiatric features. A systematic literature search was performed up to April 2019 using PsycInfo (PROQUEST), PubMed, and Scopus. From 4706 titles and abstracts, 41 studies were selected (n = 7053 patients). Pooled mild cognitive impairment prevalence was 40% on a total sample of 7053 PD patients (95% confidence interval = 36–44; Q = 490.14, P < 0.0001; I² = 91.84%) with a higher frequency for the multiple domain subtype (31%; 95% confidence interval = 23–41, Q = 93.24; P < 0.0001; I² = 92.49%). Meta-regression analysis revealed that stage of PD moderate prevalence estimates of mild cognitive impairment (β = 2.80; P = 0.008). Mild cognitive impairment in PD was associated with older age, lower education, longer disease duration, higher levodopa equivalent daily dose, more severe motor symptoms, and postural instability/gait difficulty motor subtype, poorer quality of life, higher levels of apathy, and depression. The present meta-analysis indicated that mild cognitive impairment in PD is a frequent cognitive status deserving to be early detected by means of standardized cognitive assessments in clinical practice. © 2019 International Parkinson and Movement Disorder Society     

The development and validation of a carer questionnaire to assess cognitive function in neuropsychiatric patients

OBJECTIVES: The carer history is an integral part of the assessment of patients with cognitive impairment. We aimed to develop a comprehensive yet concise carer questionnaire, the CogRisk, which captures actuarial risk variables for cognitive impairment in addition to key symptoms suggestive of cognitive decline in a number of cognitive domains, and to then assess its validity and reliability in a neuropsychiatric population. METHOD: Carers of patients assessed for cognitive impairment completed the CogRisk, and patients were clinically assessed using the Mini-Mental State Examination (MMSE) and Neuropsychiatry Unit COGnitive assessment tool (NUCOG). Reliability was assessed using test-retest and interrater measures and measures of internal consistency. Construct and concurrent validity was assessed using correlation between total and subscale scores on the CogRisk, total scores on the NUCOG and MMSE, and subscale scores on the NUCOG. Predictive validity was determined using measures of sensitivity and specificity and using receiver operating characteristic (ROC) methods. RESULTS: The CogRisk was completed by all carers in less than 10 min. The total CogRisk score correlated significantly with total MMSE and NUCOG scores (r=-0.511 and -0.563, respectively) and remained highly significant when age and education were controlled for. Internal consistency of CogRisk items was high (alpha=0.943). Intrarater reliability of the CogRisk was high with an intraclass correlation coefficient of .978 (P<.001), and interrater reliability between carers was also high at 0.868 (P<.05). Sensitivity and specificity for the detection of dementia were .70 and .73, respectively, with area under the ROC curve not significantly different from that of the MMSE or NUCOG. CONCLUSION: The CogRisk is a brief carer-rated tool of a patient's cognitive functioning developed for use within a neuropsychiatric setting. It exhibited good concurrent validity, internal consistency, and interrater and intrarater reliability. The CogRisk also demonstrated good sensitivity and specificity for dementia. The CogRisk provides carer information, which complements the clinical assessment and can be used to focus on direct carer interview.     

Stress, distress and mucosal immunity in carers of a partner with fronto-temporal dementia

Objectives: This study investigates the psychological and physiological impact of caring for a partner with fronto-temporal dementia (FTD). Carers were expected to exhibit greater stress and poorer psychological well-being in comparison with non-carers, and suppressed mucosal immunity.

Method: Twenty-five carers and 36 non-carers completed standardised psychological assessments of perceived stress, psychological well-being, coping and social support. Levels of mucosal immunity were assessed in saliva samples collected over the 3 days of the study, alongside daily assessments of stress, arousal and mood.

Results: Informal carers as a group reported greater stress and poorer psychological well-being, but there was considerable variation, with some carers reporting better psychological functioning than non-carers. Immune levels were not suppressed in carers compared with non-carers; counter to hypothesis, there was a positive correlation between immunity and poorer psychological well-being.

Conclusions: This research suggests that caring for a partner with FTD increases distress and carers might benefit from psychological intervention. However, the variation in psychological well-being requires explanation. Furthermore, this first examination of mucosal immunity employing participants experiencing enduring stress suggests that, in contrast to previous research, enduring stress does not lead to suppression of mucosal immunity and may actually enhance it.     

The needs of carers: a comparison between eating disorders and schizophrenia

Objective

This pilot study compares the level of distress and the need for support between carers of patients with anorexia (AN) and bulimia nervosa (BN) and carers of patients with schizophrenia.

Methods

Thirty-two carers of patients suffering from AN and BN and 30 carers of patients with schizophrenia filled out the general health questionnaire (GHQ-12) and the burden inventory (BI). In addition, they were interviewed with a semi-structured research interview, the carers’ needs assessment (CNA), to assess relevant problem areas as well as the need for helpful interventions. Patients with an eating disorder were interviewed with the eating disorder examination (EDE) and patients with schizophrenia with the positive and negative syndrome scale (PANSS) to assess the severity of the disorder.

Results

The mean duration of illness was 5.3 years in the patients with eating disorders and 7.3 years in the patients with schizophrenia. Most of the carers were mothers or partners. In the CNA we found high numbers of problems as well as high numbers of unmet needs for interventions. The most frequently mentioned problem areas in all groups of carers were “disappointment caused by the chronic course of the illness, concerns about the patient’s future” and “problems in communication with the patient”. The most frequently reported need for support in all groups was “counseling and support by a professional”. Carers of patients with BN reported a significantly lower number of problems and of needs for interventions compared to the carers of patients with AN and schizophrenia. Also in the BI and the GHQ-12 we found significantly lower total scores in carers of patients with BN. Carers of patients with AN and schizophrenia did not differ significantly in any of the assessments. The severity or duration of illness of the patients did not correlate with the carers’ burden or needs.

Conclusions

Carers of patients with an eating disorder and carers of patients with schizophrenia are burdened with similar problems and have high levels of unmet needs which are usually not addressed in clinical practice. Carers of anorectic patients have higher levels of difficulties in various areas compared to carers of bulimic patients and did not differ from carers of patients with schizophrenia.     

Apathy dimensions in Parkinson's disease

Objective

Apathy is a prominent and disabling symptom in Parkinson's disease (PD) and is a multidimensional behaviour, but which dimensions are specifically affected is unclear. Therefore, the aim of this preliminary study was to determine the psychometric properties of the Dimensional Apathy Scale (DAS) and explore the multidimensional profile of apathy in PD patients.

Methods

Thirty‐four PD patients, with 30 of their informants/carers, and 34 healthy controls, with 30 of their informants, completed the DAS, Apathy Evaluation Scale and the Geriatric Depression Scale Short Form. Motor staging and independent living status were recorded.

Results

Comparative group analyses revealed that PD patients were significantly more apathetic on self‐rated executive (p = 0.01) and initiation (p = 0.03) dimensions than controls, where only executive apathy was significantly higher in ratings of patients' informants/carers compared with controls' informants (p = 0.02). A third of patients were impaired on at least one apathy dimension. Additionally, patients with apathy tended to have more impaired activities of daily living, while none of the apathy dimensions related to motor disability.

Conclusion

Our findings show the DAS is a valid and reliable multidimensional apathy tool for use in PD. PD is characterised by an executive apathy profile as determined by informants/carers, although patients described both executive and initiation apathy. This indicates a lack of motivation for planning, organisation and attention and lack of initiation of thoughts or behaviours. Further research is needed to determine the cognitive underpinnings of this emerging apathy profile and the clinical impact in PD. Copyright © 2017 John Wiley & Sons, Ltd.     

A longitudinal examination of dyadic distress patterns following a skills intervention for carers of adolescents with anorexia nervosa

Family interventions in anorexia nervosa (AN) have been developed to ameliorate maladaptive patterns of patient–carer interaction that can play a role in illness maintenance. The primary aim of this study is to examine the inter-relationship between baseline and post-treatment distress in dyads of carers and patients with AN to examine the interdependence between carers and patients. The secondary aim is to examine whether a carer skills intervention [Experienced Carer Helping Others (ECHO)] impacts on this inter-relationship. Dyads consisting of treatment-seeking adolescents with AN and their primary carer (n = 149; mostly mothers) were randomised to receive a carer skills intervention (ECHO) in addition to treatment as usual (TAU), or TAU alone, as part of a larger clinical trial. Carers and patients completed a standardised measure of psychological distress (The Depression, Anxiety, and Stress Scale) at baseline and 12 months post-treatment. The Actor Partner Interdependence Model was used to examine longitudinal changes in interdependence by treatment group. As expected, post-treatment levels of distress were related to baseline levels in both groups (actor effects). Moreover, carer distress at 12 months was related to patient distress at baseline for the TAU (partner effects), but not for the ECHO group. Finally, carers’ distress change was not a significant predictor of patients’ body mass index (BMI) change in the two treatment conditions. These findings are limited to predominantly mother–offspring dyads and may not generalise to other relationships. The ECHO intervention which is designed to teach carers skills in illness management and emotion regulation may be an effective addition to TAU for ameliorating interdependence of distress in patients and their primary carers over time.     

LRRK2 Quantification in Cerebrospinal Fluid of Patients with Parkinson's Disease and Atypical Parkinsonian Syndromes

Background

The alteration of leucine-rich repeat kinase 2 (LRRK2) kinase activity is thought to be involved in Parkinson's disease (PD) pathogenesis beyond familiar cases, and LRRK2 inhibitors are currently under investigation. Preliminary data suggest a relationship between LRRK2 alteration and cognitive impairment in PD.

Objective

To investigate cerebrospinal fluid (CSF) LRRK2 levels in PD and other parkinsonian disorders, also correlating them with cognitive impairment.

Methods

In this study, we retrospectively investigated by means of a novel highly sensitive immunoassay the levels of total and phosphorylated (pS1292) LRRK2 in CSF of cognitively unimpaired PD (n = 55), PD with mild cognitive impairment (n = 49), PD with dementia (n = 18), dementia with Lewy bodies (n = 12), atypical parkinsonian syndromes (n = 35), and neurological controls (n = 30).

Results

Total and pS1292 LRRK2 levels were significantly higher in PD with dementia with respect to PD with mild cognitive impairment and PD, and also showed a correlation with cognitive performances.

Conclusions

The tested immunoassay may represent a reliable method for assessing CSF LRRK2 levels. The results appear to confirm an association of LRRK2 alteration with cognitive impairment in PD. © 2023 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.     

Factors associated with the quality of life of family carers of people with dementia: A systematic review

IntroductionFamily carers of people with dementia are their most important support in practical, personal, and economic terms. Carers are vital to maintaining the quality of life (QOL) of people with dementia. This review aims to identify factors related to the QOL of family carers of people with dementia.MethodsSearches on terms including “carers,” “dementia,” “family,” and “quality of life” in research databases. Findings were synthesized inductively, grouping factors associated with carer QOL into themes.ResultsA total of 909 abstracts were identified. Following screening, lateral searches, and quality appraisal, 41 studies (n = 5539) were included for synthesis. A total of 10 themes were identified: demographics; carer–patient relationship; dementia characteristics; demands of caring; carer health; carer emotional well-being; support received; carer independence; carer self-efficacy; and future.DiscussionThe quality and level of evidence supporting each theme varied. We need further research on what factors predict carer QOL in dementia and how to measure it.     

The development and validation of a quality of life measure for the carers of people with Parkinson's disease (the PDQ-Carer)

BackgroundParkinson’s disease (PD) can have substantial effects not only on the quality of life of those diagnosedwith the condition but also upon the informal carers who provide support and assistance to them. However, to date no well-validated carer specific quality of life measure has been developed for carers of people with PD.ObjectiveThis paper documents the development and validation of a PD specific carer quality of life scale.MethodsIn depth interviews were undertaken with carers of people with PD. The interviews were transcribed and analysed thematically to derive a pool of potential items for the questionnaire. A pilot survey was used to refine the initial version of the questionnaire. A developmental survey was undertaken and the results analysed to produce the final 29-item measure. A validation survey was then undertaken to assess the construct validity and reliability of the measure.ResultsSurvey results suggest a 29-item questionnaire tapping four dimensions of quality of life (Social and Personal Activities, Anxiety and Depression, Self care, and Strain). Internal consistency reliability was found to be high for all domains. Data completeness was high. Construct validity (assessed by correlations with a generic measure of quality of life) confirmed prior hypotheses.ConclusionThe 29-item Parkinson Disease Questionnaire for Carers (PDQ-Carer) is a short, meaningful quality of life instrument, which taps areas of specific salience and concern to PD carers.