Quality Of Life Of People With Dementia Research Articles

Impact of digital assistive technologies on the quality of life for people with dementia: a scoping review

BackgroundDigital assistive technologies (DATs) have emerged as promising tools to support the daily life of people with dementia (PWD). Current research tends to concentrate either on specific categories of DATs...

192 CONNECTED HEALTH SUSTAINING HOME STAY IN DEMENTIA (CHESS): 12-MONTH TRAJECTORY OF QUALITY OF LIFE IN PEOPLE WITH DEMENTIA

Abstract Background Research is needed to examine how Quality of Life (QoL) changes as dementia progresses. We explored QoL trajectories over a 12-month period and examined factors that influence QoL in People with Dementia (PwD). Methods Fifty-two PwD and their informal caregivers participated in the “CHESS” Study. Data were collected at five time points over 12 months between April 2017 and November 2019. Mixed-model analyses were used to investigate associations of self-rated QoL and caregiver-rated QoL (measured by the DEMQoL and DEMQoL Proxy, respectively) with factors in four domains: 1) Psychological Well-Being (PWB; measures of anxiety and depression); 2) Social Capital and Resources (SCR; incorporating access to community-based health services, education level, occupation and living situation of the PwD, employment status of the caregiver); 3) Physical Fitness and Health (PFH; including the Quantitative Timed Up and Go (QTUG), baseline grip strength, indices of frailty, sensory acuity); and Managing Everyday life with Dementia (MED; incorporating measures of cognition, behavioural disturbances, functional ability, indices of dependence of PwD). Results Across all domains, caregivers’ ratings of QoL for PwD decreased over time (p=0.012). In PWB, greater levels of depression (p=0.007) and anxiety in the PwD (p<0.001) predicted lower self-rated QoL, and higher caregiver anxiety levels predicted lower caregiver-rated QoL (p=0.012). In PFH, having a caregiver administer medication (p=0.03) was associated with higher self-rated QoL. Interestingly, caregiver-rated QoL was higher for PwD who took longer to return to sitting during the QTUG (p=0.043). In MED, being independently mobile (p=0.012) predicted higher self-rated QoL. No other factors within the SCR domain reached significance in predicting QoL. Conclusion This longitudinal analysis elucidates potential predictors of QoL in PwD. Psychological well-being in PwD and their caregivers was shown to significantly impact on QoL, and so, these factors should be routinely included in future research studies and clinical assessments.

Design and Implementation of a Smart Home in a Box to Monitor the Wellbeing of Residents With Dementia in Care Homes.

There is a global challenge related to the increasing number of People with Dementia (PwD) and the diminishing capacity of governments, health systems, and caregivers to provide the best care for them. Cost-effective technology solutions that enable and ensure a good quality of life for PwD via monitoring and interventions have been investigated comprehensively in the literature. The objective of this study was to investigate the challenges with the design and deployment of a Smart Home In a Box (SHIB) approach to monitoring PwD wellbeing within a care home. This could then support future SHIB implementations to have an adequate and prompt deployment allowing research to focus on the data collection and analysis aspects. An important consideration was that most care homes do not have the appropriate infrastructure for installing and using ambient sensors. The SHIB was evaluated via installation in the rooms of PwD with varying degrees of dementia at Kirk House Care Home in Belfast. Sensors from the SHIB were installed to test their capabilities for detecting Activities of Daily Living (ADLs). The sensors used were: (i) thermal sensors, (ii) contact sensors, (iii) Passive Infrared (PIR) sensors, and (iv) audio level sensors. Data from the sensors were collected, stored, and handled using a ‘SensorCentral’ data platform. The results of this study highlight challenges and opportunities that should be considered when designing and implementing a SHIB approach in a dementia care home. Lessons learned from this investigation are presented in addition to recommendations that could support monitoring the wellbeing of PwD. The main findings of this study are: (i) most care home buildings were not originally designed to appropriately install ambient sensors, and (ii) installation of SHIB sensors should be adapted depending on the specific case of the care home where they will be installed. It was acknowledged that in addition to care homes, the homes of PwD were also not designed for an appropriate integration with ambient sensors. This study provided the community with useful lessons, that will continue to be applied to improve future implementations of the SHIB approach.

Primary dementia care based on the individual needs of the patient: study protocol of the cluster randomized controlled trial, DemStepCare

BackgroundMost people with dementia (PwD) are cared for at home, with general practitioners (GPs) playing a key part in the treatment. However, primary dementia care suffers from a number of shortcomings: Often, diagnoses are made too late and therapies by GPs do not follow the guidelines. In cases of acute crises, PwD are too often admitted to hospital with adverse effects on the further course of the disease.The aim of this study is to implement and evaluate a new GP-based, complex dementia care model, DemStepCare. DemStepCare aims to ensure demand-oriented, stepped care for PwD and their caregivers.Methods/designIn a cluster randomized controlled trial, the care of PwD receiving a complex intervention, where the GP is supported by a multi-professional team, is compared to (slightly expanded) usual care.GPs are clustered by GP practice, with 120 GP practices participating in total. GP practices are randomized to an intervention or a control group. 800 PwD are to be included per group. Recruitment takes place in Rhineland-Palatinate, Germany. In addition, a second control group with at least 800 PwD will be formed using aggregated routine data from German health insurance companies. The intervention comprises the training of GPs, case management including repeated risk assessment of the patients’ care situation, the demand-oriented service of an outpatient clinic, an electronic case record, external medication analyses and a link to regional support services. The primary aims of the intervention are to positively influence the quality of life for PwD, to reduce the caregivers’ burden, and to reduce the days spent in hospital. Secondary endpoints address medication adequacy and GPs’ attitudes and sensitivity towards dementia, among others.DiscussionThe GP-based dementia care model DemStepCare is intended to combine a number of promising interventions to provide a complex, stepped intervention that follows the individual needs of PwD and their caregivers. Its effectiveness and feasibility will be assessed in a formative and a summative evaluation.Trial registrationGerman Register of Clinical Trials (Deutsches Register Klinischer Studien, DRKS), DRKS00023560. Registered 13 November 2020 - Retrospectively registered. HTML&TRIAL_ID=DRKS00023560.

321 - Association between quality of life and anxiety, depression, and comorbid anxiety and depression in people with dementia in nursing homes: A 12-month follow-up study

Background:Anxiety and depression are highly prevalent among people with dementia (PWD), and has many negative outcomes, such as increased behavioral problems, decreased ability to live independently, and increased risk of nursing home placement, which may affect the person’s quality of life (QoL). Many cross-sectional studies have investigated factors associated with QoL in PWD in nursing homes, but few longitudinal studies have investigated how anxiety and depression affect the course of QoL of PWD in nursing homes. This study aimed to explore the association between QoL and anxiety, depression, and comorbid anxiety and depression in PWD in nursing homes at a 12-month follow-up.Methods:In all, 298 PWD ≥ 65 years old from 17 Norwegian nursing homes were assessed with Norwegian version of the Rating Anxiety in Dementia scale (RAID-N). Anxiety was defined as RAID-N score ≥ 12. QoL was assessed by Quality of Life in Late-Stage Dementia (QUALID) scale. Depression was assessed by the Cornell scale of depression in dementia (CSDD), defined as CSDD score ≥ 10. The assessments were made at baseline and after a mean follow-up period of 350 days (SD 12.3). A growth mixture model revealed two distinct trajectories of QUALID scores. Participants’ characteristics and related risk factors associated to QUALID score trajectories were analyzed by logistic regression models.Results:In trajectory group 1 (206 participants), a lower proportion of participants had anxiety, and a more stable and better QoL, compared to trajectory group 2 (92 participants) with a higher proportion of participants with anxiety and poorer QoL at a 12-month follow-up. Participants with comorbid anxiety and depression had the worst QoL than the participants with only anxiety or only depression. Adjusted multivariate logistic regression analysis revealed that more severe impairment in activities of daily living, presence of anxiety, depression, agitation, and use of antipsychotics at baseline, were associated with belonging to the trajectory group with poor QoL.Conclusion:It is important among nursing home personnel to increase awareness of and skills in identifying anxiety and depression, and to initiate adequate management to enhance Qol of PWD in nursing homes.Note: The material was published in September 11, 2018 in Plos one.

Effects of Exergaming on Cognitive and Social Functioning of People with Dementia: A Randomized Controlled Trial

ObjectivesPhysical activity in people with dementia (PwD) may enhance physical and mental functioning. Exergaming, which combines physical exercise with cognitive stimulation in a gaming environment, was developed to overcome barriers in performing physical activities. We evaluated the effects of exergaming in day care centers (DCCs) for PwD and informal caregivers (ICs). DesignA randomized controlled trial among 23 DCCs across the Netherlands randomized to exergaming (interactive cycling during 6 months) or a care-as-usual control group. Setting and ParticipantsA total of 112 (73 exergaming, 39 control) community-dwelling dyads (PwD, IC), with the PwD visiting a DCC at least twice per week. MethodsAll outcomes were assessed using structured questionnaires during interviews with PwD and ICs at baseline (T0), 3 months (T1), and 6 months (T2). Primary outcomes: physical activity and mobility of the PwD. Secondary outcomes: physical, cognitive, emotional and social functioning, and quality of life for PwD. For ICs: experienced burden, quality of life, and positive care experiences. ResultsMixed-model analyses showed no statistically significant effects on primary outcomes. There were statistically significant positive effects on PwD's secondary outcomes at T2 on cognition [Mini-Mental State Examination (MMSE): r = 2.30, 95% confidence interval (CI): 0.65, 3.96, P = .007; and Trail Making Test part A (TMT-A): r = −28.98, 95% CI: −54.89, −3.08, P = .029], social functioning (Behavior Observation Scale for Intramural Psychogeriatrics subscale 1 (GIP): r = −1.86, 95% CI: −3.56, −0.17, P = .031), and positive post-test effects in ICs on distress caused by the PwD's neuropsychiatric symptoms (NPI-Q total distress: r = −3.30, 95% CI: −6.57, −0.03, P = .048) and on sense of competence (SSCQ: r = 2.78, 95% CI: 0.85, 4.71, P = .005). Conclusions and ImplicationsExergaming appeared not effective on the primary outcomes. Despite the study being underpowered, we found positive effects on secondary outcomes for PwD and ICs, and no negative effects. We therefore recommend further study, dissemination, and implementation.

Finding critical features for predicting quality of life in tablet-based serious games for dementia

While the number of dementia cases is steadily increasing, as of today no medication has been developed to cure its underlying causes. Instead, the focus in treatment has shifted to improve quality of life (QoL) for people with dementia (PwD). To this end, some non-pharmacological treatments such as exercising, socializing, and playing games have received increasing attention. PflegeTab is a tablet-based application developed for this purpose. It includes a number of services such as cognitive training games, everyday activity training games, emotional applications, and a biographical picture album. In the present paper, we explore the possibility of QoL prediction for PwD using data collected while nursing home residents played games in PflegeTab ($$N = 81$$). Using features generated from the data and applying linear discriminant analysis for classification, our approach obtained an average accuracy of 74.80% on predicting QoL ratings when measured by Monte Carlo cross-validation. Furthermore, this paper investigates which features were dominant for the classification (prominent features were e.g. time needed for task completion) and briefly discusses how the results might be utilized for managing general QoL of PwD.

HOMESIDE: home-based family caregiver-delivered music and reading interventions for people living with dementia: protocol of a randomised controlled trial

IntroductionPharmacological interventions to address behavioural and psychological symptoms of dementia (BPSD) can have undesirable side effects, therefore non-pharmacological approaches to managing symptoms may be preferable. Past studies show that music...

Trajectories of quality of life and their association with anxiety in people with dementia in nursing homes: A 12-month follow-up study.

ObjectivesThis study aimed to identify possible groups of people with dementia (PWD) in nursing homes with different trajectories of proxy-rated quality of life (QoL), and to explore how anxiety (along with other characteristics) was associated with these trajectories of QoL of PWD in nursing homes at a 12-month follow-up.MethodsWe included 298 PWD aged 65 years and older from 17 Norwegian nursing homes. The Norwegian version of the Rating Anxiety in Dementia scale (RAID-N) was used to assess anxiety, defined as RAID-N score ≥12; proxy-rated QoL was assessed by Quality of Life in Late-Stage Dementia (QUALID). The assessments were made at baseline and after a mean follow-up period of 350 days (SD 12.3). A growth mixture model identified two distinct trajectories of QUALID scores. Association between the QUALID score trajectories and demographic and clinical characteristics were analyzed with logistic regression models.ResultsTrajectory group 1 (206 participants) had a lower proportion of participants with anxiety, and a more stable and better QoL, compared to trajectory group 2 (92 participants) at a 12-month follow-up. In a multivariate logistic regression analysis, more severe impairment in activities of daily living, along with presence of anxiety, depression, agitation, and use of antipsychotics at baseline, were associated with belonging to the trajectory group with proxy-rated poor QoL.SignificancesThis study reveals that anxiety is associated with proxy-rated poor QoL of PWD at a 12-month follow-up. Efforts should be made to identify anxiety among nursing home residents with dementia to initiate treatment.

A Web-Based Platform for People With Memory Problems and Their Caregivers (CAREGIVERSPRO-MMD): Mixed-Methods Evaluation of Usability.

BackgroundThe increasing number of people with dementia (PwD) drives research exploring Web-based support interventions to provide effective care for larger populations. In this concept, a Web-based platform (CAREGIVERSPRO-MMD, 620911) was designed to (1) improve the quality of life for PwD, (2) reduce caregiver burden, (3) reduce the financial costs for care, and (4) reduce administration time for health and social care professionals.ObjectiveThe objective of this study was to evaluate the usability and usefulness of CAREGIVERSPRO-MMD platform for PwD or mild cognitive impairment (MCI), informal caregivers, and health and social care professionals with respect to a wider strategy followed by the project to enhance the user-centered approach. A secondary aim of the study was to collect recommendations to improve the platform before the future pilot study.MethodsA mixed methods design was employed for recruiting PwD or MCI (N=24), informal caregivers (N=24), and professionals (N=10). Participants were asked to rate their satisfaction, the perceived usefulness, and ease of use of each function of the platform. Qualitative questions about the improvement of the platform were asked when participants provided low scores for a function. Testing occurred at baseline and 1 week after participants used the platform. The dropout rate from baseline to the follow-up was approximately 10% (6/58).ResultsAfter 1 week of platform use, the system was useful for 90% (20.75/23) of the caregivers and for 89% (5.36/6) of the professionals. When users responded to more than 1 question per platform function, the mean of satisfied users per function was calculated. These user groups also provided positive evaluations for the ease of use (caregivers: 82%, 18.75/23; professionals: 97%, 5.82/6) and their satisfaction with the platform (caregivers: 79%, 18.08/23; professionals: 73%, 4.36/6). Ratings from PwD were lower than the other groups for usefulness (57%, 13/23), ease of use (41%, 9.4/23), and overall satisfaction (47%, 11/23) with the platform (P<.05). Qualitative comments related to both improvements for functionality and the platform interface.ConclusionsAlthough caregivers and professionals were overall satisfied with the platform, further adaptations were recommended by PwD. This reiterates the importance of the involvement of end users in the development of Web-based interventions. Recommendations from users in this paper apply for the interface and functionality of a wider range of Web-based support interventions.

The Evaluation of a Compassion-Focused Therapy Group for Couples Experiencing a Dementia Diagnosis

ABSTRACTObjectives: This study evaluated the effectiveness of a Compassion-Focused Therapy (CFT) group on reducing anxiety, depression, and respiratory rate (RR) in people with dementia (PwD) and their spouses, and improving quality of life (QoL) of PwD.Method: Sixty-four participants completed six weekly CFT sessions. Baseline and post-intervention assessments were analyzed using t-tests and Reliability Change Index.Results: Mean baseline and post-assessment anxiety and depression scores fell in the ‘normal range’; although a significant reduction in depression with moderate effect was observed for PwD. Fifty-seven percent of PwD with borderline to abnormal baseline scores showed clinically significant improvement in anxiety and depression. For spouses, 80% showed clinically significant improvement in depression and 50% in anxiety. RR reduced for PwD and spouses with large and medium effects respectively. QoL of PwD improved with a large effect.Conclusions: CFT appears effective in improving QoL and depression in PwD and reducing RR in PwD and spouses. CFT reduces anxiety and depression in most PwD and spouses with borderline to abnormal symptoms.Clinical Implications: This study indicates benefits of a group-CFT intervention delivered to people with a range of dementia diagnosis and their spouses. The service should investigate whether individuals in greater distress are not accessing the group and improve engagement.

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

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. 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. 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. 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.

Quality of life in mild dementia: patterns of change in self and caregiver ratings over time.

Objectives:To determine changes over time in self and caregiver ratings of quality of life (QoL) in people with dementia (PwD) and to identify factors associated with changes in QoL ratings.Methods:In this longitudinal study, 69 people with mild Alzheimer’s disease and their caregivers were assessed at baseline and after 1 year. We examined the association of QoL ratings with the following variables at the two time points: awareness of disease, cognitive status, mood, functionality, neuropsychiatric symptoms, and caregiver burden. Multivariate regression analyses were conducted to examine the contribution of co-factors.Results:At baseline, PwD self-ratings of QoL were associated with caregiver ratings of PwD QoL (p = 0.001). Caregiver ratings were associated with PwD mood (p = 0.001) and self-rated QoL (p = 0.001). After 1 year, caregiver ratings of PwD QoL changed significantly (p = 0.049, d = -0.27), whereas PwD self-ratings did not (p = 0.89, d = 0.09). PwD awareness of disease changed significantly (p = 0.001) at 1 year, having declined in 25.4% and improved in 12.3% of participants. PwD QoL self-ratings were associated with caregiver ratings (p = 0.001). Caregiver ratings of PwD QoL after 1 year were associated with PwD mood (p = 0.029), self-reported QoL (p = 0.001), and awareness of disease (p = 0.033).Conclusions:The association between self and caregiver ratings of PwD QoL was maintained over 1 year. The primary factors accounting for the change in caregiver ratings were PwD mood and awareness of disease. QoL and cognitive impairment seem to be relatively independent in mild dementia.

Spouse-caregivers' quality of life in Alzheimer's disease.

The relationship between sexuality and quality of life (QoL) of spouse-caregivers remains unclear. We designed this study to evaluate the relationship between sexual satisfaction and spouse-caregivers' QoL, and to determine the influence of the clinical characteristics of people with dementia (PWD) on spouse-caregivers' self-reported QoL. Using a cross-sectional design, 54 PWD and their spouse-caregivers completed the QoL in Alzheimer's Disease scale (QoL-AD), questionnaire on sexual experience and satisfaction (QSES), Mini-Mental State Examination (MMSE), Clinical Dementia Rating scale (CDR), Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD), Pfeffer functional activities questionnaire (FAQ), the Cornell scale for depression in dementia (CSDD) and Zarit burden interview (ZBI). Univariate and multivariate regression analyses were conducted to identify the factors that influenced the spouse-caregivers' QoL ratings. We did not find a significant difference in QoL between male and female spouse-caregivers (p = 0.71). We also found that 13% of males and 48.1% of females demonstrated moderate to severe sexual dissatisfaction. However, we did not find a significant correlation between spouse-caregivers' QoL and sexual satisfaction (p = 0.41). The linear regression indicated that impaired awareness and lower QoL of PWD were significantly related to spouse-caregivers' QoL (p = 0.000). The spouse-caregivers' QoL is influenced by awareness of disease and PWD QoL. Our study would be helpful for the development of adequate psycho-educational approaches to increase spouse-caregivers' QoL, considering the specificities of the couples' relationship.

Predictors of self- and caregiver-rated quality of life for people with dementia living in the community and in nursing homes in northern Taiwan.

Factors affecting quality of life (QOL) ratings for people with dementia (PWD) have been well studied, but few studies have examined the effect of residence on PWD- and caregiver-rated QOL for PWDs. We designed this study to determine the factors related to PWD- and caregiver-rated QOL in dementia as well as factors related to the discrepancy in these ratings. For this cross-sectional study, we analyzed data from a convenience sample of 106 PWD-family caregiver dyads (58 community-dwelling dyads and 48 nursing-home dyads). PWDs' data included socio-demographic variables, QOL (assessed by the Quality of Life-Alzheimer's Disease [QOL-AD] scale), cognition, dementia severity, depression, comorbidities, and quality of the dyadic relationship. Caregivers' data included socio-demographic variables, depressive symptoms, and mutuality of the dyadic relationship. QOL-AD scores were lower when rated by caregivers than by PWDs. The key factors positively related to both PWD- and caregiver-rated QOL for PWDs were fewer PWD depressive symptoms and higher quality of the PWD-caregiver relationship. The key factors related to the discrepancy in PWD- and caregiver-rated QOL in dementia were PWD residence in a nursing home and lower dementia severity, as well as higher caregiver depression, being an adult child caregiver, and lower caregiver-PWD mutuality. Caregiver-rated QOL for PWDs and the discrepancy in rated QOL were significantly associated with PWD residence. If caregiver-rated QOL is needed, the effect of residence of PWD should be taken into consideration. Caregivers' depressive status and mutuality with PWD must be also carefully assessed.

Quality of Life and Quality of Care for People With Dementia Receiving Long Term Institutional Care or Professional Home Care: The European RightTimePlaceCare Study

To explore how quality of life (QoL) and quality of care (QoC) for people with dementia (PwD) vary across 8 European countries; to explore how QoL and QoC for PwD vary across living arrangements; and to assess the association between QoL and QoC. Cross-sectional survey. Institutional long term care and home care in 8 European countries (England, Estonia, Finland, France, Germany, the Netherlands, Spain, and Sweden). PwD receiving formal home care but at risk for admission to an institutional setting, and PwD who were recently admitted. QoL was assessed by the PwD and by their best informed proxies using the Quality of Life-Alzheimer's Disease scale (QoL-AD) (range 13-52). QoC was measured using quality of care indicators (eg, the presence of depressive symptoms, the presence of pressure ulcers). A total of 1123 PwD living at home (mean age 82.2, 63%women) and 791 PwD living in institutional care (mean age 84.1, 74% women) participated. QoL of PwD was most often rated highest in Sweden and England and lowest in Estonia and Spain. No differences in QoL were detected among the settings. For the QoC indicators, no consistent patterns were visible in such a way that certain countries or settings scored "higher" or "lower." The presence of depressive symptoms was most consistently associated with lower QoL (P ≤ .001). There is great variation in QoL and QoC scores among European countries and settings. To gain insight into the underlying causes of these differences, more knowledge is needed about the effect of different national health care systems and dementia strategies on QoL and QoC indicators. Depressive symptoms were associated with QoL, and executing longitudinal studies investigating which factors are associated with change in QoL is highly recommended.

Judging a book by its cover: uniforms and quality of life in special care units for people with dementia.

In certain health care facilities, the staff commonly wear uniforms for dementia care. Wearing uniforms are often believed to improve the well-being of institutionalized people with dementia (PwD) by facilitating orientation and preserving hygiene. However, when studied more thoroughly, it appears that their use counters to person centeredness. This study aims to investigate the impact of wearing uniforms on the quality of life (QoL) of institutionalized PwD. A natural experimental design was operated in 4 special care units (SCUs) in France. Two SCUs served as an experimental group (caregivers wearing street clothes except when performing hands-on physical care; N = 13) and 2 served as a comparison group (caregivers wearing uniforms; N = 14). The QoL of PwD was measured using the QoL-Alzheimer's Disease scale, and focus groups were carried out with caregivers. Overall and significantly enhanced QoL scores were observed for the experimental street clothing staff group when compared to the uniform group. Caregivers also reported subjective impressions of overall beneficial outcomes for PwD when the caregivers were not wearing uniforms and reported feeling more at ease when interacting with them. Results are discussed in terms of intergroup relationships, living and working conditions, and ethical issues.

Quality of life in dementia: the role of non-cognitive factors in the ratings of people with dementia and family caregivers

The validity of self-reported quality-of-life (QoL) assessments of people with dementia (PWD) is a critical issue. We designed this study to determine the non-cognitive factors that are associated with self-reported QoL and PWD QoL as rated by family caregivers. Using a cross-sectional study, we assessed QoL of 41 people with mild Alzheimer's disease (AD). The individuals with AD and their family caregivers completed the Quality of Life in Alzheimer's Disease Scale (QoL-AD), the Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD), the Mini-Mental State Examination (MMSE), the Clinical Dementia Rating (CDR) scale, the Cornell Scale for Depression in Dementia (CSDD), the Pfeffer Functional Activities Questionnaire (FAQ), and the Zarit Burden Interview (ZBI). Univariate and multivariate regression analyses were conducted to examine the contribution of the various cofactors. We observed a significant difference (t = 3.292, p < 0.01, d = 0.727) in the QoL measures of PWD after comparing self-reported assessments with the assessments of family caregivers. Linear regression analysis demonstrated that awareness of disease was related to PWD QoL-AD scores. Both the education levels of family caregivers and the depressive symptoms in PWD were related to the family caregivers' ratings of PWD QoL. The difference between self-reported QoL and family caregivers' ratings of QoL in people with mild dementia indicated that cognitive impairment was not the primary factor that accounted for the differences in the QoL assessments. Our findings suggested that non-cognitive factors, such as awareness of disease and depressive symptoms, played an important role in the differences between the self-reported AD QoL ratings and the caregivers' AD QoL ratings. A major implication is that discrete measures such as cognition or level of function are likely to miss important factors that influence QoL.

People with dementia living alone: what are their needs and what kind of support are they receiving?

In the U.K. about 141,460 people with dementia (PWD) live alone. They are at risk of social isolation and inadequate social and medical supervision. The aims of this study were to identify the needs of PWD living alone and to compare the needs of PWD living alone versus those living with others. It was predicted that PWD living alone would have significantly more unmet needs than those living with others. 152 PWD were interviewed about their cognitive status and quality of life (QoL); and 128 informal carers were interviewed about the PWD's QoL, social networks, behavioral and psychological symptoms (BPSD), functional status, and services used. For 24 PWD no carer was available. Carers were also interviewed about their own symptoms of depression, anxiety, burden, and satisfaction. Researchers rated PWD's needs. One-third of the PWD (50) were living alone. PWD living alone had significantly more unmet needs (M = 3.9, s.d. 3.1) than those living with others (M = 2.0, s.d. 2.0) (U = 1578, p < 0.01) particularly in the areas of looking after home (chi2 = 17.23, p < 0.001), food (chi2 = 13.91, p < 0.002), self-care (chi2 = 10.23, p < 0.002) and accidental self-harm (chi2 = 16.51, p < 0.001). The most frequent unmet needs were daytime activities (27, 54.0%), company (26, 52.0%), psychological distress (22, 44.0%), eyesight/hearing (16, 32.0%), and accidental self-harm (16, 32.0%). PWD living alone are a vulnerable group who are at increased risk for unmet social, environmental, psychological and medical needs. This study illustrates the need to identify these individuals and to make provisions among social service agencies to monitor their well-being regularly and provide a higher level of support when needs are identified.