Sexual behaviour of institutionalised residents with dementia – a qualitative study

Aims. The purpose of this study was to explore the characteristics of and the contexts related to sexual behaviours among institutionalised residents with dementia. Background. Institutionalised residents with dementia are frequently unable to manage their sexual needs properly resulting in caregivers having a more conservative and passive attitude toward residents with dementia than those with higher cognitive status. Design. A grounded theory study. Methods. The participants in this study were institutionalised older people with dementia and their formal caregivers. Data were collected using in‐depth, face‐to‐face interviews of 12 formal caregivers and by observing 12 institutional older people with dementia for three days. All observations were recorded and interview data were tape recorded and transcribed verbatim. Results. The results indicated that the predisposing factors included having opportunity, presence of a cooperative target and personal space without privacy. The sexual expressions of institutionalised older people with dementia included: physically intimate touch, sexual expression without touching others and sexual talk. Responses by individuals to sexual behaviour from another resident included neutral response, negative response and positive response. Conclusion. To provide better care, it is recommended that an inventory regarding sexual expression for clinical and research usage be constructed from the research results. Relevance to clinical practice. The findings of this study can provide the basis to develop on‐the‐job training programmes for sexual education of residents with dementia in institutions. Regular seminars on sexual care for the residents with dementia might be beneficial for managing sexual issues among residents and to decrease caregivers’ burden.     

Single ability among activities of daily living as a predictor of agitation

Aims. The aims of this study were to investigate whether the interaction effect between restraint and functional ability, and single ability during activities of daily living can predict agitation among residents with dementia. Background. Agitated behaviour is one of the most common symptoms of dementia and might endanger the patients themselves, caregivers and institutions. However, the prevalence of problem behaviours and its associated factors at long‐term care facilities in Taiwan are less understood. Design. A direct observation was used to observe the agitated behaviours of residents with dementia in special care units. Methods. Residents of dementia special care units who were diagnosed with dementia in eight long‐term care facilities were recruited. Measurements included: demographic data, the Barthel Index, the Mini‐Mental State Examination and the Cohen‐Mansfield Agitation Inventory. Results. The number of subjects who were identified with problem behaviours was 163 (43·5%). Significant differences in sex, being restrained, restrained time, age, family visits, functional status and mental status were found between the agitated and non‐agitated groups. However, mental status, family visits, walking ability, being restrained and getting in and off toilet were five independent factors associated with agitated behaviours after controlling for all other factors. Conclusions. It is recommended that strategies be constructed to encourage the family to periodically visit older residents and to develop restraint‐free environments in long‐term care facilities. Relevance to clinical practice. Residents with dementia require significant daily living support and behaviour management as their illness progress.     

The effect of massage on agitated behaviours in older people with dementia: a literature review

Aims and objectives. To review the literature on massage used to manage agitated behaviours in older people with dementia, assess its efficacy as a non‐pharmacological approach and provide recommendations for future research. Background. Agitation has traditionally been managed with chemical or physical restraint. There has been a growing interest in complementary therapies such as massage. Design. A literature review. Methods. Cooper’s five‐stage model of synthesising research guided the review process. The search terms ‘massage’, ‘agitation’ and ‘dementia’ were defined, and 10 databases were searched in October 2011. No date limitations were applied, although searches were limited to articles written in English. For relevant records, full‐text copies were obtained and assessed in terms of inclusion criteria and methodological quality using the Validity Rating Tool (VRT). Data were extracted using a form constructed with reference to the checklist of items to consider in data extraction, produced by the Cochrane Handbook for Systematic Reviews of Interventions. Results. Thirteen studies met the inclusion criteria and were assessed on the VRT. One study was considered of adequate methodological quality to be included in the review. This prospective study found that massage significantly reduced levels of agitation in 52 cognitively impaired residents in two long‐term care facilities. Conclusions. There is a severe paucity of research that considers the effects of massage on managing agitated behaviours in older people with dementia. Whilst conclusions cannot be drawn from the one study included in this review, it did provide evidence to support the use of massage as a non‐pharmacological approach to managing agitation in older people with dementia. More research, of better methodological quality, is needed. Relevance to clinical practice. There is a need for health practitioners to be aware of the limited evidence for massage as an intervention for agitation and to provide opportunities to validate massage practice.     

Dementia and aggressiveness: stimulated recall interviews with caregivers after video-recorded interactions

Background. In a previous study, nine caregivers and two residents with dementia showing aggressive behaviour, were video recorded. Caregivers who reported problems when dealing with such behaviour and caregivers, who did not, were included in this study. Aim. The aim of the present study was to obtain insight into the reasoning of the caregivers who had reported problems when dealing with older people with dementia and aggressiveness and those who did not relative to their respective video‐recorded interactions with these residents. A further aim was to gain insight by discussing their reasoning in relation to each other. Method. Stimulated recall interviews were carried out with all the caregivers who had been video taped in the previous study. The text was analysed by thematic content analysis. Findings. Two main ways of thinking and discussing the care situations emerged. The caregivers, who had reported problems in handling behavioural and psychiatric symptoms in dementia earlier, reasoned that they were more focused on their duties, this included being responsible for the resident receiving her weekly shower. For this group of caregivers, the well being of the resident was in focus, but their attention was concentrated on the resident's well being and comfort after their shower. However, these caregivers seemed therefore unwittingly to prevent a positive interaction with the resident. The other caregivers were able to reflect spontaneously and appeared to be self‐critical. This caregiver group seemed to sustain a positive interaction with the resident both during and after the shower. Relevance to clinical practice. In this study a nurturing and supportive climate and competence seemed to be the conditions necessary to facilitate reflections and promote creativity in the caregivers such that they are able to develop possible ways of handling difficult situations like aggressiveness in residents with dementia.     

The effects of group music with movement intervention on agitated behaviours of institutionalized elders with dementia in Taiwan

BACKGROUND: Agitated behaviours are identified by caregivers as the most challenging in dementia care. Alternative approaches reducing occurrence of agitated behaviours and the need for chemical or physical restraints become valuable for institutionalized elders with dementia. OBJECTIVE AND SETTING: This study was to evaluate the effects of group music with movement intervention on occurrence of agitated behaviours of institutionalized elders with dementia in Taiwan. METHODS: A randomized controlled trial was used. Thirty-six institutionalized elders with dementia completed the study, with 18 in the experimental group receiving group music with movement intervention twice a week for 4 weeks and 18 in the control group receiving usual care without intervention. Modified Cohen-Mansfield Agitation Inventory was used to assess agitated behaviours at baseline, weeks 2 and 4. RESULTS: Agitated behaviours were significantly reduced in the experimental group following 4 weeks of group music with movement intervention compared to that of the control group (p<0.001). CONCLUSIONS: Group music with movement intervention can be beneficial in managing agitated behaviours of those with dementia and should be incorporated into care routines in residential facilities.     

Reactions of primary caregivers of frail older people and people with cancer in the palliative phase living at home

Title. Reactions of primary caregivers of frail older people and people with cancer in the palliative phase living at home Aim. This paper is a report of a study conducted to (1) compare means of the single items and the dimensions of the Caregiver Reaction Assessment among caregivers of frail older people and caregivers of cancer patients in the palliative phase; (2) examine gender differences for the scoring parameters in the Caregiver Reaction Assessment within each group and (3) examine the demographic variables’ association with the caregiver groups’ scores for the dimensions of the Caregiver Reaction Assessment. Background. Limited research has focused on the caregiver situation in the home‐care setting among primary caregivers of frail older people, and caregivers of patients with cancer in the palliative phase. Methods. A convenience sample of 224 caregivers of frail older people, and 85 caregivers of patients with cancer in the palliative phase was recruited between 2002 and 2005. We used the Caregiver Reaction Assessment to collect the data. Results. The mean scores for the Caregiver Reaction Assessment dimensions showed statistically significant differences between the two groups of caregivers for the factors self‐esteem, family support, finances and health. For caregivers of frail older people, we found statistically significant associations between several demographic variables and the Caregiver Reaction Assessment dimensions. For caregivers of patients with cancer in the palliative phase, age was the only demographic variable that was statistically significantly associated with the dimensions. Conclusion. Healthcare personnel should pay attention to how relatives experience their caregiver situation, and the Caregiver Reaction Assessment could be a valuable tool for gathering systematic data on this.     

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.     

Development of Self-Efficacy Questionnaire for Chinese Family Caregivers

The purpose of this study was to develop a Self-Efficacy Questionnaire for Chinese Family Caregivers. Semi-structured interviews with 10 family caregivers of people with dementia were conducted to explore how Chinese caregivers manage caregiving and what difficulties they face. The findings of the study assisted in the development of the instrument. Five categories of caregiver behaviours were identified from the qualitative data: gathering information about treatment, symptoms, and health care; obtaining support; responding to behaviour disturbances; managing household, personal, and medical care; and managing distress associated with caregiving. The challenges of caregiving were also identified, including deterioration of care recipients, particularly their behaviour disturbances, a shortage of supportive resources, stigmatization of dementia among the general population, as well as increased distress and decreased social activities due to increased care demand. The findings were used to develop the Self-Efficacy Questionnaire for Chinese Family Caregivers, and 35 items comprising five subscales (representing the above five categories of caregiver behaviour) were generated.     

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.     

Institutionalized elders with dementia: collaboration between family caregivers and nursing home staff in Taiwan

Aims and objectives. To explore the process of development of collaborative relationship between family caregivers of institutionalized elders with dementia and nursing home staff in Taiwan. Background. Evidence suggests that family members are continuously involved in the lives of loved ones and have not given up their roles as caregivers after the institutionalization of a family member. Little is known, however, about how family caregivers develop a collaborative relationship with nursing home staff, particularly in Asian countries. Design and methods. Grounded theory methodology was used. Data were collected via interviews and observations from 11 family caregivers of patients who were suffering from dementia and living in an institution for persons with dementia in northern Taiwan. Data were analysed by constant comparative analysis. Results. Findings revealed that ‘institutional social penetration’ was the process most used by family caregivers to achieve an harmonious collaborative relationship with the nursing home staff. Institutional social penetration is a dynamic process, which includes three components: self‐disclosure, evaluation of care and penetration strategies. Family caregivers, who had developed a ‘socially penetrating’ relationship with the nursing home staff, were more likely to disclose information in more breadth and depth, to receive positive care evaluations and to adopt multiple effective penetration strategies. Conclusions. Institutional social penetration between family caregivers and nursing home staff can sensitize healthcare providers to meet the family's needs during the placement of their loved one and provide a basis for developing intervention strategies. Relevance to clinical practice. Findings of this study may help healthcare providers to understand the ways in which collaborative relationships develop between the families of elders with dementia and nursing home staff. Interventions can be developed to facilitate self‐disclosure of both the family members and nursing home staff through timely feedback and familiarising family caregivers with different penetration strategies.     

‘Living Together With Dementia’: preliminary results of a training programme for family caregivers

The aim of this article was to present the preliminary results of a training programme for family caregivers of people with dementia at an early to moderate stage living at home – ‘Living Together With Dementia’. In this randomised controlled trial, 27 family caregivers who met the inclusion criteria were recruited from the neurology outpatient consultation clinic of a hospital in the north of Portugal and randomised into two groups (control and experimental) between October 2015 and March 2016. The programme ‘Living Together With Dementia’ was applied to the participants of the experimental group. The strategies used, overload, difficulties and satisfaction of the caregivers were assessed at three different stages (at the beginning and end of the intervention, as well as at follow‐up). For the data analysis, quantitative parametric measures were applied. The Health Ethical Commission of the Hospital Centre approved the study, and its protocol and Helsinki Declaration ethical principles were considered throughout the process. In the final assessment, an improvement in the overload and difficulties was confirmed, as was an increase in the caregivers’ satisfaction level and an improvement in coping/problem‐solving strategies. In the follow‐up stage, the results tended to revert towards those of the initial assessment. The programme ‘Living Together With Dementia’ appeared to be a major contribution enabling family caregivers of people with dementia, although there is a need to develop an efficacy study using a more substantial sample. The programme contributed to a reduction in the overload and difficulties borne by the family caregivers of people with dementia at an early to moderate stage living at home and to increased caregiver satisfaction.     

A comparison of emotional/behavioural problems between Taiwanese children with cancer and healthy controls

Aims. The purpose of this study was to compare children, diagnosed with cancer, who were attending school, with their healthy peers on emotional and behavioural problems. Background. Children who suffer from cancer experience severe side effects from their treatment protocols and from the uncertainty associated with their disease. We were seeking to find out if these children subsequently experienced more emotional and behavioural problems than their healthy peers. Methods. Parents and teachers of paediatric oncology patients and their healthy schoolmates were recruited. The ratio was one patient to two schoolmates. The Child Behaviour Checklist (CBCL) was used to collect data from the parents and teachers of 23 paediatric cancer patients and 46 healthy controls. Children were matched on enrollment in the same grade and socioeconomic status of their families. Paired‐t tests were used to compare the differences between the emotional/behavioural scores of both groups of children. Results. The findings of the study indicated that children with cancer had statistically higher scores on the following items of the CBCL: withdrawn/depressed, somatic complaints, social problems, thought problems, hyperactivity/impulsivity, rule‐breaking behaviours and aggressive behaviours. Conclusions. School children with cancer in Taiwan did have more emotional/behavioural problems than their peers. Findings from this study suggest that Taiwanese paediatric oncology patients who are able to return to school and their families may need more psychosocial care. Relevance to clinical practice. Healthcare professionals may need to extend their professional services to school settings to decrease long‐term emotional and behavioural problems in children with cancer.     

Caregiving demands,job demands,and health outcomes for employed family caregivers of older adults with dementia: Structural equation modeling

Many family caregivers are also employed full- or part-time and are known to be affected by job demands. This study explored the mediating effect of job demands on the relationship between caregiving demands and caregiver health outcomes in primary family caregivers of older persons with dementia in Taiwan (N?=?214). A cross-sectional design using a self-completed structured questionnaire was implemented. Structural equation modeling analyses showed that job demands partially mediated the relationship between caregiving demands and caregiver health outcomes. The indirect effect of caregiving demands on caregiver health outcomes through job demands was 0.208 (95% confidence interval: 0.053 - 0.335). Nurses should evaluate job demands when screening for high-risk caregiver groups vulnerable to high caregiving demand. Interventions aimed at lessening both caregiving demands and job demands may improve caregiver health outcomes for family caregivers of older adults with dementia.     

A practical guide to caring for caregivers

Patients who provide care to family members or friends with dementia are likely to be in a family physician's practice. The caregiver role can be stressful, and identifying these patients can give the family physician opportunities to help patients cope with the challenges of the caregiver role. Family physicians have a systematic approach for assessing the degree of caregiver burden in these patients. Because caregivers are at increased risk for depression and anxiety, screening should be done to exclude the presence of either disorder. The caregiver's skill in managing behavioral problems in the family member with dementia should be assessed. If there are problems, family physicians should provide practical counseling about common caregiving stresses and about resources that benefit caregivers. Helping the caregiver learn strategies for coping with difficulties may help reduce some of the stress the caregiver is experiencing.     

Characteristics of hypertension‐related factors in female home caregivers in Japan—comparison with general community non‐caregivers

Aims and objectives. To examine the characteristics of hypertension‐related factors in female family caregivers in Japan who provide care in the home, in comparison with general community non‐caregivers. Background. Hypertension is more frequently encountered in female caregivers than in non‐caregivers. Lifestyle factors including sleep and eating habits differ in Japanese female caregivers and the general population. Therefore, hypertension‐related factors in caregivers may also differ from those in the general population. Design. A cross‐sectional study. Methods. The subjects were 150 female caregivers (aged 62·4, SD 12·2 years) who provided home care for persons with physical impairments and/or dementia and 154 female controls (aged 62·7, SD 2·2 years) who did not provide home care. Persons with a history of ischaemic heart disease or cerebral stroke were excluded. Subjects were examined using a self‐reporting questionnaire that included a food frequency questionnaire and the tri‐axial coping scale. Urine examinations and blood pressure measurements were also done. Logistic regression analysis was conducted for each group with the same variables as explanatory variables. Results. Hypertension was present in 46·7% of caregivers and 34·4% of controls (p < 0·05). Menopause was a factor related to hypertension in both the caregivers and controls. In the caregiver group, hypertension was associated with the estimated 24‐h Na excretion in urine and the carbohydrate‐energy ratio for nutriti. BMI was associated with hypertension in the control group, but not in the caregiver group. Conclusions. Hypertension was associated with nutritional factors, such as greater Na excretion in urine and higher carbohydrate energy ratio, in Japanese female caregivers and with obesity in non‐caregivers. Relevance to clinical practice. To prevent hypertension, it is necessary to carefully monitor salt intake and nutritional balance in female caregivers in Japan.     

The relationship between comorbidities in dementia patients and burden on adult–child primary caregivers: Does having a secondary caregiver matter?

Primary family caregivers of patients with dementia often experience high caregiver burden and significant decline in a range of health outcomes. The current study examined the relationship between medical comorbidities of inpatients with dementia and caregiver burden in adult–child primary caregivers, and the buffering effect of having a secondary caregiver on the relationship between patients’ comorbidities and caregiver burden. The study is a secondary analysis of data from a cross‐sectional observational study design. The sample comprised 477 dyads of inpatients with dementia and adult–child primary caregivers attending the neurological department of two grade A hospitals. All the inpatients were assessed with the Charlson Comorbidity Index (CCI) and the Mini‐Mental State Examination (MMSE). All the adult–child primary caregivers were assessed with the Zarit Burden Interview (ZBI) and completed the questionnaires on socio‐demographic data, caring hours, presence of secondary caregiver, and the level of impairment of the patient. Higher burden was associated with higher scores on the CCI and having a spouse of the patient as the secondary caregiver. A significant interaction occurred between the CCI and caregiver burden when having a spouse as the secondary caregiver, indicating the negative effect of the CCI on caregiver burden was greater when the spouse of the patient served as the secondary caregiver. In summary, the negative impact of patients’ comorbidities on caregiver burden in adult–child primary caregivers was heightened when the secondary caregiver role was undertaken by the spouse of the patient with dementia. These results may inform programmes targeted to improve care arrangements for people with dementia and their caregivers.     

The relationship between caregiver’s strain and social support among mothers with intellectually disabled children

Aims and objectives. To explore caregiver’s strain, the relationship between social support and caregiver’s strain and the predictors of caregiver’s strain among mothers with school‐aged intellectually disabled children in Taiwan. Background. Strain is a common condition among mothers who take care of intellectually disabled children; this correspondingly reduces their ability to care for children, thereby affecting the functioning of the entire family. Yet, there have been very few studies on caregivers of intellectually disabled children of school age. Design. Cross‐section correlational design. Methods. Data collection consisted of face‐to‐face interviews combined with a structured questionnaire. Instruments employed were the Caregiver Strain Index, Social Support Scale and three open‐ended questions. In total, 127 mothers completed the questionnaire. Results. Results showed that mothers with intellectually disabled children had a rather high level of strain and received inadequate social support. Social support and strain had a significant and negative correlation. Stepwise regression analysis revealed that mothers’ health status, social support and amount of time spent as a caregiver, as well as the intellectually disabled children’s dependent degree of daily living activity, were major predictors of caregiver’s strain, which accounted for 38·4% of the total variance. Conclusions. The results provide a guide for healthcare professionals in designing effective interventions and preventive care to reduce the level of strain in mothers with intellectually disabled children. This, in turn, could improve the quality of life of the mother and her family. Relevance to clinical practice. In Taiwan, care of intellectually disabled children is primarily provided by family members. Therefore, we should emphasise family‐centred care to enable healthcare professionals to become more effective as case managers in local clinics, schools and communities.     

The efficacy of acupressure for decreasing agitated behaviour in dementia: a pilot study

Aims and objectives. To investigate the efficacy of acupressure in decreasing agitated behaviours associated with dementia. Background. Agitated behaviour is found in nearly half of all patients who have dementia. The presence of these behaviours increases the likelihood of injury, weakness, dehydration and lack of sleep and contributes to caregiver frustration and fatigue. Design. This pilot study was designed with subjects receiving both acupressure and the control treatment. Each subject served as his or her own control. Subjects received four weeks of acupressure protocols; to avoid a carry‐over effect there was a treatment‐free period of one week. Subjects then were visited by one of the investigators for a six‐week period. Methods. Participants were recruited from a nursing home caring specifically for patients with dementia. Twenty of the 31 subjects (64·5%) completed the study, while 11 were discharged or hospitalized. All the subjects were assigned to an experimental protocol and had a six‐week acupressure treatment program. Baseline data were collected in the first week. Individual treatment sessions began at the second week of the study and lasted 15 minutes, twice a day, five days a week for four weeks. After a treatment‐free period of one week, all the subjects served as controls undergoing a four‐week control protocol consisting of companionship and conversation. Results. Comparison between the control and experimental phases indicated significant differences between the two groups on all outcome measures (Cohen–Mansfield Agitation Inventory, daily agitation records about physical attack, verbal and non‐verbal attack and non‐physical attack) with better results found during the acupressure phase. Conclusions. Acupressure is recommended as an efficacious and non‐intrusive method for decreasing the agitation behaviours in patients with dementia. Relevance to clinical practice. Conducting the acupressure treatment takes 15 minutes. It could provide caregivers with a viable alternative to deal with patients with dementia.