Determinants of the discrepancy in patient‐ and caregiver‐rated quality of life for persons with dementia

Aims. To determine factors related to the discrepancy in patient‐ and proxy‐rated quality of life for patients with dementia; whether this discrepancy is associated with characteristics of patients, caregivers or the caregiver–patient relationship; and which characteristics best predict this discrepancy. Background. To increase the reliability of quality of life measurements for persons with dementia, many researchers have incorporated proxy reports. However, their investigations have indicated that caregiver‐rated quality of life is not the same as the patient’s own rating. The factors related to this discrepancy have previously been explored, but studies rarely focussed on the quality of the caregiver–patient relationship as a determinant of the discrepancy. Design. A cross‐sectional design was used. Methods. Data were gathered from community‐based interviews with 120 dyads of patients with Alzheimer’s disease or related dementia and their caregivers in Taipei. A structured questionnaire was used to collect data, and the main variable (quality of life–Alzheimer’s disease) was rated separately by patients and caregivers. The data were analysed using intraclass correlation coefficients and multivariate regression methods. Results. The agreement between patients’ and caregivers’ quality of life–Alzheimer’s disease ratings was low. This discrepancy was significantly associated with disturbing dementia behaviour, caregivers’ perceived distress for problem behaviours, caregivers’ overall quality of life and quality of the caregiver–patient relationship. Conclusions. The observed discrepancy between caregiver‐ and patient‐rated quality of life for persons with dementia was largely predicted by the quality of the caregiver–patient relationship. Relevance to clinical practice. Medical professionals should cautiously deliberate when using caregiver‐reported quality of life to substitute for patient‐reported quality of life. When using a proxy report or a combined caregiver–patient rating, medical professionals should assess the quality of the relationship between patient and proxy.     

Family caregiver perspectives on social relations of elderly residents with dementia in small‐scale versus traditional long‐term care settings in the Netherlands and Belgium

Aims and objectives. To provide insight into family caregiver perspectives on social relations within the ‘caregiving triangle’ between family caregiver, professional caregiver and elderly resident with dementia. Results were compared between traditional versus small‐scale long‐term care settings in the Netherlands and Belgium. Background. Residential dementia care is shifting towards a more holistic and person‐centred approach. Until now, little is known about family caregiver perspectives. Design. A quasi‐experimental longitudinal design. Methods. This study was part of a larger research project focusing on the quality of life of residents with dementia in traditional and small‐scale settings (n = 179). This study focused on family caregivers related to these residents (n = 64). They filled in a questionnaire containing 25 items (baseline and after 12 months) related to their perspectives on the interaction within the ‘caregiving triangle’. Analyses were performed using mixed models and logistic regression. Results. Compared to traditional settings, family caregivers of relatives with dementia living in small‐scale settings had more contact with the professional caregivers, were more satisfied with this contact and felt that staff paid more attention to their feelings as family members. They also reported that staff showed better listening skills towards the residents. Furthermore, compared to those in Belgium, family caregivers in the Netherlands perceived staff to be less hurried and more accepting of help from family and felt that staff more often takes the resident seriously. Conclusion. In the move towards more person‐centred care for residents with dementia, this study finds preliminary evidence for the importance of integrating the family perspective. Relevance to clinical practice. Gaining more insight into the perspectives of family caregivers on the social relations within the ‘caregiving triangle’ may provide knowledge about the importance of the social system surrounding elderly residents with dementia and can provide pointers for future research.     

Attitudes toward dementia‐related aggression among staff in Japanese aged care settings

Aim and objective. This study investigated attitudes of Japanese aged care staff toward aggression by people with dementia. Relationships between staff attitudes, professional characteristics and clinical practice were explored. Background. Aggressive behaviour is often demonstrated by people with dementia and may be influenced by many factors including an inability by the individual to appropriately express their needs, difficulties with assessment, as well as organisational and practice issues. Design. Survey. Method. Twenty‐seven facilities/organisations located in the western and middle parts of Japan were surveyed. Staff (n = 675) employed in these facilities provided personal and professional information and completed the Attitudes Towards Aggression Scale. Results. Staff who were older, had more clinical experience, higher education and/or a higher position reported more positive attitudes towards patient aggression. Staff with negative attitudes towards patients who are aggressive reported using chemical and/or physical restraint more often than staff with positive attitudes. Conclusions. Dementia education as well as restraint policy will be useful in addressing negative staff attitudes, in particular it may help to reverse the myth that restraint is necessary for staff protection. Furthermore, staff counseling may help to reduce stressors and to change staff negative attitudes towards people with dementia who display aggression. Relevance to clinical practice. The findings show that negative staff attitudes may adversely affect clinical decision making and patient care. Measuring attitudes can identify areas requiring education or skill development and enable changes in attitudes to be monitored over time.     

Caregiver self‐efficacy for managing behavioural problems of older people with dementia in Taiwan correlates with care receivers’ behavioural problems

Aims and objective. To investigate the relationship between family caregivers’ self‐efficacy for managing behavioural problems of older people with dementia and their behavioural problems in Taiwan. Background. Older people with dementia commonly have at least one behavioural problem, which caregivers complain is difficult to handle. To provide interventions that can help caregivers more effectively manage the behavioural problems of care receivers with dementia, caregivers’ self‐efficacy on managing behavioural problems must be assessed. However, it is not clear yet how these behavioural problems of older people with dementia may influence caregivers’ self‐efficacy for managing behavioural problems. Design. A prospective, correlational study. Method. Eighty dyads of older people with dementia and their family caregivers were recruited from neurological clinics of a medical centre in Taiwan. Care receivers were assessed for behavioural problems using the Chinese version of Cohen‐Mansfield Agitation Inventory, community form. Caregivers’ self‐efficacy for managing care receivers’ agitation was measured by the research team‐developed Agitation Management Self‐Efficacy Scale. Results. Caregiver self‐efficacy for managing behavioural problems was significantly and positively associated with more caregiver education, greater duration of caregiving and with care receivers’ less physically non‐aggressive behaviours. When caregiver characteristics were controlled for in hierarchical regression analysis, physically non‐aggressive behaviours explained 6% of the variance in caregiver self‐efficacy. Conclusions. Results of this study contradict the general belief that physically aggressive behaviours of elders with dementia are more difficult for family caregivers to handle than other behavioural problems. Clinicians need to address physically non‐aggressive problem behaviours. Relevance to clinical practice. Nurses could assess older patients with dementia for physically non‐aggressive behaviours and train less educated caregivers to improve their self‐efficacy for managing problem behaviours, thus enhancing the quality of life for both caregivers and care receivers.     

Perceived enactment of autonomy of nursing home residents: A German cross‐sectional study

Recognizing the ageing of populations and expected increase in prevalence of dementia, the necessity of research involving persons with dementia is widely agreed upon. Autonomy is key to nursing home residents' well‐being and quality of life, but this phenomenon has not been thoroughly assessed from the residents' perspective. The aim of this cross‐sectional study was to investigate perceived autonomy of nursing home residents. Data on 560 randomly selected residents in 40 nursing homes in two German federal states were generated by face‐to‐face interviews, psychological and physical assessments, analysis of nursing records, and acquisition of institutional parameters. This paper reports on a subsample (n = 179) that met screening requirements, including subjects with and without mild cognitive impairment (Mini Mental Status Examination score 30–18), who completed the Hertz Perceived Enactment of Autonomy Scale (HPEAS). The mean score of HPEAS was 101.1 ± 14.5 (range 54–122). In our population, Cronbach's alpha was 0.89. Scores in HPEAS were not related to demographical factors but positively associated with increasing self‐efficacy and absence of pain. The novel findings contribute to an understanding of autonomy from the residents' perspective.