Impact of COVID-19 restrictions on carers of persons with dementia in the UK: a qualitative study

Background: Informal carers provide the majority of the support for persons with dementia living at home. Restrictions imposed due to COVID-19 have had a profound impact on the daily life of the entire population. This study provides insight into the impact of these restrictions on carers of people with dementia living at home. Design: Qualitative semi-structured interviews. Participants: Purposive sample of carers who provide at least 10 hours of care a week for the person with dementia living at home. Setting: United Kingdom. Results: Twenty-three carers were interviewed, and thematic analysis identified three main themes - Changes to daily life, impact on carer health and wellbeing and reduced support from health and social support networks. The results highlight the impact of restrictions imposed on daily life and routines due to the pandemic, wellbeing of carers, reduced social support, lack of access to health and care professionals and respite for carers. The restrictions have had negative consequences on carers' wellbeing, and they have experienced difficulties in accessing formal care services and respite care. Conclusion: Carers attempt to continue to provide physical, emotional and practical support for persons with dementia in the community throughout the COVID-19 restrictions. To prevent a future carer crisis, carers need better support systems including formal carer services, telecare solutions that work for them and additional support for respite, as the restrictions from this pandemic continue

Carers using assistive technology in dementia care at home: a mixed methods study

Introduction Informal carers support persons with dementia to live at home, even with deteriorating physical, social and cognitive issues. This study aims to examine the experiences and impact of Assistive Technology (AT) on carers, providing care for a person with dementia. Methods This is an explanatory sequential mixed methods study. The quantitative phase was an online and postal survey using the Carers Assistive Technology Experience Questionnaire and Short Form-12 (SF-12) questionnaire, with carers of persons with dementia in the UK, who used AT. The qualitative phase involved in-depth telephone interviews with a purposive sample of survey respondents and was analysed using hermeneutic phenomenology to develop, compare and explain the findings of the survey. Results The survey included data from 201 carers. Smartphones (45.5%) and tablet computers (45.0%) were the most frequently used AT. Multiple AT were used in the care of persons with dementia predominantly for safety (78.5%), communication (66.0%), and reminders (62.5%). The SF-12 indicated that carers in the 46–65 age group and carers who were not extremely satisfied with AT had lower mental component scores whilst carers who lived with the person with dementia and older carers had lower physical component scores. Twenty-three carers participated in the interviews, and 5 themes with 14 sub-themes were identified. The interviews helped confirm data from the survey on the impact of AT on the physical, mental and social wellbeing of the carers. It helped describe reasons for satisfaction with AT; how AT was used in daily life and strengthened caring relationships and how wider support systems enhanced the care of a person with dementia using AT. Conclusions This study describes the use of AT in the real-world context. AT supplements the care provided to people with dementia in the community. Appropriate use, access to AT and abilities of the carer can enhance the support provided through AT to both carers and the person with dementia

Data quality, floor and ceiling effects, and test–retest reliability of the Mild Cognitive Impairment Questionnaire

BACKGROUND: The Mild Cognitive Impairment Questionnaire (MCQ) is a 13-item measure that assesses health-related quality of life (HRQoL) in people with mild cognitive impairment (PWMCI); it has two domains assessing the emotional and practical effects. OBJECTIVE: The aim of this study was to assess the psychometric properties of the MCQ. DESIGN: This is a longitudinal questionnaire-based study. SETTING: The participants were recruited from the memory clinics and research databases in the South of England. SUBJECTS: A total of 299 people aged 50 years and older with a diagnosis of mild cognitive impairment confirmed within the preceding 12 months. METHODS: MCQs were distributed to patients in memory clinics and those listed on research databases. Participants who returned completed questionnaires were sent a second copy of the MCQ to return 2 weeks after receiving the first questionnaire. RESULTS: Five hundred and seven questionnaires were distributed; response rates were 68.2% initially and 89.2% for the second questionnaire. From the returned questionnaires, response rates for each item were high (>98%) and a full range of responses for each item was received with no evidence of significant floor or ceiling effects. Internal consistency reliability for both scale scores at both time points was good, with Cronbach’s α≥0.84 in all cases. Test–retest reliability was excellent for both domains with the intraclass correlation coefficients of 0.90 and 0.92 for the practical and emotional domains, respectively. Paired sample t-tests also confirmed the stability of scale score distributions over time. CONCLUSION: The MCQ has robust psychometric properties, which make it suitable for assessing HRQoL in PWMCI, including comparison of group level data in intervention studies

Informal carers’ experience and outcomes of assistive technology use in dementia care in the community: a systematic review protocol

Background Dementia is one of the greatest health and care priorities globally. Caring for persons with dementia is a challenge and often leads to negative psychological, physiological and financial consequences for informal carers (family members or friends). Many informal carers experience moderate to severe levels of burden. Advances in technology have the potential to assist persons with dementia and their carers, through assistive technology (AT) devices such as electronic medication dispensers, robotic devices and motion detectors. However, little is known about informal carers’ experience and the impact of these technologies on them. This review aims to investigate the outcomes and experience of carers of persons with dementia, who live at home and use AT. Method MEDLINE, Embase, CINAHL, AMED, ALOIS, PsycINFO, Trial registries and OpenGrey databases will be searched for studies of any design that have investigated carer experience and/or outcomes of AT use for persons with dementia living at home. Manual searches from reference lists of relevant papers will also be undertaken. Outcomes of interest are carers’ self-reported outcomes (which include perceived burden, quality of life and wellbeing) and carer experiences (such as usefulness, benefits and disadvantages of AT and impact on caregiver/care receiver relationship). Two independent reviewers will screen identified papers with pre-defined eligibility criteria and extract data using a bespoke extraction form. Discrepancies will be resolved in discussion with a third reviewer. A synthesis of eligible studies and summary will be provided. Discussion A systematic review of quantitative, qualitative and mixed methods evidence of informal carers’ experience of AT use in dementia in the community will be carried out. It is anticipated that this will highlight (1) investigations on impact of AT use on carers, (2) outcome measures and experience questionnaires that have been used and (3) the types of studies carried out so far on this topic. The results from the review will be presented in a summary matrix of common types (e.g. mobile phones, alarms) and uses (e.g. communication, safety, personal care) of AT in dementia care and also identify AT that is not usually available through government or health system funding

The use of the SF-36 questionnaire in adult survivors of childhood cancer: evaluation of data quality, score reliability, and scaling assumptions

BACKGROUND: The SF-36 has been used in a number of previous studies that have investigated the health status of childhood cancer survivors, but it never has been evaluated regarding data quality, scaling assumptions, and reliability in this population. As health status among childhood cancer survivors is being increasingly investigated, it is important that the measurement instruments are reliable, validated and appropriate for use in this population. The aim of this paper was to determine whether the SF-36 questionnaire is a valid and reliable instrument in assessing self-perceived health status of adult survivors of childhood cancer. METHODS: We examined the SF-36 to see how it performed with respect to (1) data completeness, (2) distribution of the scale scores, (3) item-internal consistency, (4) item-discriminant validity, (5) internal consistency, and (6) scaling assumptions. For this investigation we used SF-36 data from a population-based study of 10,189 adult survivors of childhood cancer. RESULTS: Overall, missing values ranged per item from 0.5 to 2.9 percent. Ceiling effects were found to be highest in the role limitation-physical (76.7%) and role limitation-emotional (76.5%) scales. All correlations between items and their hypothesised scales exceeded the suggested standard of 0.40 for satisfactory item-consistency. Across all scales, the Cronbach's alpha coefficient of reliability was found to be higher than the suggested value of 0.70. Consistent across all cancer groups, the physical health related scale scores correlated strongly with the Physical Component Summary (PCS) scale scores and weakly with the Mental Component Summary (MCS) scale scores. Also, the mental health and role limitation-emotional scales correlated strongly with the MCS scale score and weakly with the PCS scale score. Moderate to strong correlations with both summary scores were found for the general health perception, energy/vitality, and social functioning scales. CONCLUSION: The findings presented in this paper provide support for the validity and reliability of the SF-36 when used in long-term survivors of childhood cancer. These findings should encourage other researchers and health care practitioners to use the SF-36 when assessing health status in this population, although it should be recognised that ceiling effects can occur

The Oxford Participation and Activities Questionnaire (Ox-PAQ): Development of a short form and index measure

Background: The Oxford Participation and Activities Questionnaire (Ox-PAQ) is a 23-item patient-reported outcome measure (PROM) theoretically grounded in the World Health Organisation International Classification of Functioning, Disability and Health. Initial validation of the Ox-PAQ identified three domains; Routine Activities (14 items), Emotional Well-Being (5 items) and Social Engagement (4 items). The purpose of the analyses reported here were to determine whether an overall index score can be calculated from the measure, and then to determine whether a shorter form measure can replicate results on the index score. Methods: Two surveys of people with long term conditions. In the first study higher order factor analysis is used to determine that a single index score can be calculated for the Ox36 PAQ. Regression analyses are used to determine a sub-set of items selected for the Short Form Ox-PAQ (SF-Ox-PAQ). In the second study results on the Ox-PAQ Single Index and SF-Ox-PAQ Single Index are compared with results from another generic measure, the EuroQol EQ-5D-5l. Results: Higher order factor analysis confirmed that a single index score can be created from the Ox-PAQ. Further, linear regression indicated 14 items could reliably and accurately produce this index. The two methods of creating the index were highly correlated (ICC = 0.99). The two indices were found to provide almost identical levels of correlation with EQ44 5D-5L scores. Conclusions: Results indicate that the Ox-PAQ can be summed to provide an index score, and, furthermore, a sub set of fourteen items can very closely replicate the results gained from the original parent form

Administering the routine activities domain of the Oxford Participation and Activities Questionnaire as a stand-alone scale: the Oxford Routine Activities Measure

Background: The recently validated Oxford Participation and Activities Questionnaire (­Ox-PAQ) is a 23-item patient-reported outcome measure, theoretically grounded in the World Health Organization International Classification of Functioning, Disability and Health. The measure is specifically designed to assess participation and activity in people experiencing a range of health conditions. Initial validation of the Ox-PAQ identified three domains: Routine Activities (14 items), Emotional Well-Being (5 items), and Social Engagement (4 items). The purpose of the analysis reported here was to assess whether the Routine Activities domain of Ox-PAQ could be validated for use as a stand-alone measure without compromising its psychometric integrity. Methods: Three hundred and seventy-three patients with a diagnosis of either chronic obstructive pulmonary disease, multiple sclerosis, or Parkinson’s disease were administered the Ox-PAQ in an online survey. The 14 items of the Routine Activities domain of the Ox-PAQ were subject to factor analytic techniques and assessed for reliability and validity. Results: Three hundred and forty-one patients fully completed the survey, a completion rate of 91.4%. The 14 items loaded onto one single factor with an eigenvalue of 9.29 explaining 66.35% of variance. Reliability was confirmed through corrected item-total correlations ranging from 0.880 to 0.594 and a Cronbach’s alpha value of 0.96. Validity was demonstrated through significant differences in scores between the three disease groups assessed. Conclusion: Results indicate that the Ox-PAQ Routine Activities domain can be legitimately adopted as a stand-alone measure, the Oxford Routine Activities Measure, where researchers wish to focus primarily on the activity component of the Ox-PAQ. It should, however, be emphasized that where a full assessment of all areas of activity and participation highlighted as important during the development of the Ox-PAQ is required, all three domains of the full measure should be administered

Patients experience of fatigue in advanced heart failure

Aims: Explore the experience of living with fatigue in persons with advanced heart failure. Design: Single-setting, qualitative interview study. Methods: In-depth interviews were conducted from November 2012 – June 2013. Participant responses to open-ended questions were analysed using thematic analysis. Inclusion criteria: 18 years and older, diagnosis of New York Heart Association class III-IV heart failure with reduced ejection fraction and able to participate in interviews in their own language. Exclusion criteria was cognitive deficit Twenty-three participated in the study. Results: Participants (age 72.5 ± 9.5 years, 10/23 female), identified experiencing fatigue daily with 14/23 reporting it as their worst symptom or combined worst symptom with breathlessness. Three key themes were identified: fatigue as a physical barrier, psychological response to fatigue, and living with fatigue as a part of daily life. Conclusion: As heart failure progresses fatigue influences patients’ daily life and may negatively affect self-care abilities however patients strive to adapt to these limitations

Predictors of activity and participation across neurodegenerative conditions: a comparison of people with motor neurone disease, multiple sclerosis and Parkinson’s disease

Background: Comparisons between neurological conditions have the potential to inform service providers by identifying particular areas of difficulty experienced by affected individuals. This study aimed to identify predictors of activity and participation in people with motor neurone disease (MND), people with multiple sclerosis (MS) and people with Parkinson’s Disease (PD). Methods: The Oxford Participation and Activities Questionnaire (Ox-PAQ) and Medical Outcomes Study 36-Item Short Form Survey (MOS SF-36) were administered by postal survey to 386 people with a confirmed diagnosis of MND, MS or PD. Data analyses focused on stepwise regression analyses in order to identify predictors of activity and participation in the three conditions assessed. Results: Three hundred and thirty four participants completed the survey, a response rate of 86.5%. Regression analyses identified multiple predictors of activity and participation dependent on Ox-PAQ domain and disease group, the most prominent being social and physical functioning as measured by the MOS SF-36. Conclusions: Results indicate that the physical and social consequences of neurological illness are of greatest relevance to people experiencing the conditions assessed. Whilst the largely inevitable physical implications of disease take hold, emphasis should be placed on the avoidance of social withdrawal and isolation, and the maintenance of social engagement should become a significant priority