Health-related quality of life in carers of patients with dementia

BACKGROUND: Carers of patients with dementia experience high levels of stress that can adversely affect their health and well-being. OBJECTIVE: Our aim was to assess the health-related quality of life of carers of patients with dementia compared with an age- and gender-matched sample from the general population. METHODS: A cross-sectional study was conducted in 37 primary health care centres in Catalonia, Spain. Carers (n = 181; 78% females, mean age 63 years) of patients with dementia together with a random sample of 543 individuals from the general population, matched for age and gender, were assessed with the SF-36 questionnaire, which is a generic measure of health status. RESULTS: With the exception of physical function category, seven of the scales showed lower scores for females in the carer group. The most important differences were observed in the emotional role [95% confidence interval (CI) -37.7 to -3.6], mental health (95% CI -21.0 to -1.6) and bodily pain (95% CI -37.7 to -8.6) categories. In contrast, male carers had higher scores in the physical function category (95% CI 2.2-19.4), and no differences were observed on the other scales. CONCLUSION: Female carers of patients with dementia experienced a seriously decreased quality of life level compared with their contemporaries in the general population.     

Evaluation of an integrated service delivering post diagnostic care and support for people living with dementia and their families

Greater integration of health and social care services is considered vital to ensure sustainable long‐term quality provision for the growing numbers of people living with dementia and their families. Integration of services is at the heart of government policy in England. We evaluated a new integrated service for post diagnostic dementia care, funded as a pilot and delivered through a partnership of statutory and voluntary sector health and social care organisations. The service used an adapted Admiral Nursing service model with a workforce of Admiral Nurses (ANs) and Dementia Advisers (DAs). A mixed method approach was used to assess implementation and outcomes. It involved collection of service activity data, carer reported experience survey data, focus group discussions and interviews with the service delivery team, and the management group. Qualitative data was analysed using a framework approach. About 37.8% of the eligible population registered with the service over the 14‐month pilot period. The self‐referral route accounted for the majority of referrals, and had enabled those not currently receiving specialist dementia care to engage with the service. Carer satisfaction surveys indicated high levels of satisfaction with the service. The caseload management system offered specific benefits. Individual caseloads ensured continuity of care while the integrated structure facilitated seamless transfer between or shared working across AN and DA caseloads. The skill mix facilitated development of the DA role increasing their potential contribution to dementia care. Challenges included managing large workloads and agreeing responsibilities across the skill mix of staff. This model of fully integrated service offers a novel approach to address the problems of fragmented provision by enabling joined‐up working across health and social care.     

Effects of dog-assisted intervention on quality of life in nursing home residents with dementia

Background: People with dementia often have a poor quality of life. Therefore, methods that can improve their life situation must be identified. One promising method is dog-assisted intervention.

Aim: This study aimed to investigate the effects of dog-assisted intervention on quality of life in nursing home residents with dementia.

Materials and methods: A one-group, pretest post-test study design was used. Quality of life was measured using the QUALID in 59 nursing home residents prior to and after a dog-assisted intervention. Non-parametric tests were used to analyze the data, and effect sizes were calculated.

Results: The participants’ total scores improved significantly between baseline and post-test 1 (p?=?<?0.001) and worsened significantly at post-test 2 (p?=?0.025). The largest effect size was found for the item ‘Verbalization suggests discomfort’ (p?=?0.001).

Conclusion: The results indicate that dog-assisted interventions can have positive effects on quality of life in nursing home residents with moderate to severe dementia.

Significance: The results contribute to a growing knowledge base about non-pharmacological methods that can be used in dementia care. Occupational therapists should consider dog-assisted interventions when planning activities that can reduce the illness burden and improve the quality of life for people with dementia.     

Quality of life impacts from rotavirus gastroenteritis on children and their families in the UK

AimsRotavirus vaccines (RV) are safe and effective but demand significant investment of healthcare resource. In countries with low mortality due to rotavirus, a key component to assessing cost-effectiveness is quantifying the Health Related Quality of Life (HRQoL) lost due to rotavirus acute gastroenteritis (RVAGE).MethodsFamilies with children less than six years old with gastroenteritis were recruited from attendees to Bristol Children's Hospital Emergency Department. Stools were tested for viral causes of gastroenteritis. Children's HRQoL was assessed at presentation using Health Utilities Index 2 (HUI2) with visual analogue scale (VAS). The effect of the child's illness on the HRQoL of up to two adult carers was assessed using EQ-5D-5L. Families completed a daily symptom diary to assess time to recovery and within-family transmission.Results127 families consented to take part, 84(65%) had rotavirus as the cause of illness. At the time of attendance, mean paediatric HRQoL with RVAGE was 0.74(HUI2) and 0.42(VAS). Primary/secondary carer's HRQoL was 0.68/0.80 (EQ5D) or 0.70/0.79 (VAS). The mean number of QALYs lost due to RVAGE was 3.1–3.5 per thousand children and 7.7–8.7 per thousand family units.In 52% of RVAGE families at least one other member developed a secondary case of gastroenteritis. For working parents, 69% missed work, for a mean of 2.8 days (95% CI 2.3–3.4).ConclusionsWe have found the HRQoL loss associated with RVAGE in children and their carers to be significantly higher than estimates used for all RV medical attendances in UK cost-effectiveness calculations.     

Years of life lived with and without dementia in Australia, 2004–2006: a population health measure

Objective: To estimate the fraction of remaining life lived with and without dementia among Australian males and females at later life. Method: Analysis was performed by applying the life table technique that integrates mortality and morbidity statistics to derive a single population health indicator. Observed prevalence rates were used to calculate life expectancy with dementia. Results: At the age of 65 years, males are expected to live an additional 18 years, of which 6% would be lived with dementia. Females surviving to 65 years, are likely to live a further 22 years, 9% of which is expected to be lived with dementia. At the age of 85 years, males live a further six years; one‐sixth of this life spent with dementia. Females surviving to this age would live an additional seven years, with one‐fourth of that life with dementia. The portion of life lived with dementia out of total remaining years of life increases with age at the rate of 20 to 30% every five years beyond the age of 65. Conclusion. The extension of life expectancy is associated with increased duration of life lived with dementia. As females live longer than males, they experience a greater impact of dementia.     

Life values in patients with COPD: Relations with pulmonary functioning and health related quality of life

Theories of coping and response shift have suggested that emotional adaptation is related to value changes, e.g. a deemphasized importance of lost life values and an enlargement of the scope of values. Perceived attainment and importance of 82 life values were examined in 65 patients with chronic obstructive pulmonary disease (COPD) and related to clinical and Health-Related Quality of Life (HRQL) measures. The life values covered 10 dimensions – harmony, positive relations, involvement, mobility, communication, knowledge, responsibility, comfort, religion and health. Forty-six of the patients were followed up after 1 year. The patients with COPD were compared with a healthy control group, a group of neurologically impaired and a non-disabled group representing the general population. Significant congruence was found between importance and attainment ratings in all groups (correlations from 0.44 to 0.53), suggesting that both impaired and healthy persons tend to perceive that they have what they find important in life. Congruence was significantly related to mood (correlations from 0.28 to 0.40), but not to functional status or clinical data. Compared to the healthy responders, the patients with COPD had significantly lower attainment ratings in health, mobility, involvement, but no differences were found for importance ratings. No evidence was found that they had replaced unattainable values with new available values, and no changes over time of perceived values were found. This suggests that patients with COPD do not seem to adapt by means of changing their value orientation.     

Sexual satisfaction, quality of life and the transaction of intimacy in hospital patients' accounts of their (hetero)sexual relationships

Abstract Twenty‐three people attending hospitals in a city in southern England were interviewed to explore their perceptions and experiences of sexual dysfunction and satisfaction, and the relationship between these issues and subjective understandings of quality of life. Their responses are examined to inform theories concerning the relationship between intimacy and sexuality in heterosexual relationships. Disturbances to sexual function are framed by wider social realities and echo sociological understandings of disability and chronic illness. Informants’ accounts utilised a mechanistic ‘urge’ model of sexuality, although issues of intimacy and emotion were central to their understandings of quality and satisfaction. Sexual activity in the relationship was understood as a mutual exchange of intimacy, suggesting a construction of sexual intercourse as a form of transaction between gendered sex ‘workers’, mimicking commodity relations. Accounts of the devastation brought by sexual dysfunction reflected highly socialised expectations of sexual performance. There is a need for further theoretical and empirical scrutiny of the relationship between sexual function and quality of life.     

People with dementia attending farm‐based day care in Norway – Individual and farm characteristics associated with participants’ quality of life

Farm‐based day care for people with dementia is supposed to improve the participants quality of life by using activities and resources of the farm environment to promote mental and physical health. In this paper, we describe the characteristics of those attending farm‐based day care services in Norway and explore the association between individual and farm characteristics and the quality of life. A sample of 94 people with dementia who attended farm‐based day care was recruited from 25 farms between January 2017 and January 2018. The data collection was performed using standardized instruments. Information about the farms was retrieved from a former study. The association between the participants’ quality of life and their individual and/or farm characteristics was examined with a linear multilevel regression model. The participants had a mean age of 76 years, 62% were men, and 68% had additional education after primary school. Most of them had mild (54.3%) or questionable dementia (18.3%). A few participants used antipsychotics (3.7%), tranquilizers (9.9%) and painkillers (13.6%), while a higher number used antidepressants (30.9%). Quality of life was associated with the experience of having social support (p = .023), a low score on depressive symptoms (p < .001), and spending time outdoors at the farm (p < .001). The variation between the farm‐based day care services in the participants’ reported quality of life was related to time spent outdoors at the farm. In light of the present study, it seems as farm‐based day care is addressing people with dementia in an early stage, dominated by men, with quite good physical and medical condition. The strong association between quality of life and spending time outdoors underscores that facilitation for outdoor activity should be prioritized in all types of dementia care.     

Quality of life assessment by community pharmacists: an exploratory study

Implicit in the evolving role of pharmacy is that its practitioners embrace the concept of quality of life (QoL). In recent years there has been an increased interest in incorporating health-related quality of life (HRQoL) measures into clinical practice, primarily focusing on the physician as the user of this information. Pharmacists may be able to use these instruments in their practices to provide better pharmaceutical care. To explore the feasibility of such an undertaking, questionnaires were mailed to a national sample of community pharmacies. In addition to the questionnaire, the respondents were provided with examples of two instruments: the Duke Health Profile and the QOLIE-10. A definition of HRQoL was provided to the respondents. After two mailings and a reminder postcard, a usable response rate of 27.2% was achieved. The results revealed that over 80% of the respondents currently discuss HRQoL issues with their patients. In addition, 66% reported that they attempt to assess the HRQoL of their patients, albeit usually on a subjective, informal basis. After viewing examples of HRQoL instruments, over three-quarters of the respondents reported a willingness to use HRQoL assessment tools in their practices. However, only 53.7% of the respondents were familiar with the concept of HRQoL. Less than 5% reported familiarity with formal instruments. The self-reported knowledge of pharmacists concerning HRQoL was low and the respondents recognized a significant gap between their current knowledge and the level of knowledge needed to assess the HRQoL of their patients formally. The results suggest a possible role for the pharmacist in HRQoL assessment. However, the use of HRQoL instruments in community pharmacies will require further training and education on the part of pharmacists concerning the concept of HRQoL, the issues involved in its measurement and how they can use HRQoL information in their practices. In addition, a number of unanswered questions must be addressed through the research process in order for HRQoL questionnaires to become clinical tools in the practice of pharmacy.     

Quality of life of patients with end stage renal disease: a structural equation model

In this study, the perceived quality of life (QOL) of 215 patients with end stage renal disease (ESRD) was examined. A LISREL model describing the patients' perceptions of their QOL was tested and, after some revisions, was found to be consistent with the data ( ²=33.76, df=25, p=0.113). QOL was measured by: the Self-Anchoring Striving Scale, the index of Well-Being, and the Time Trade-Off Technique. The model includes the patients' medical characteristics, their health status, functional status, support and outlook. Outlook, functional status and treatment modality had significant direct effects on QOL. Support influenced QOL through the mediating variable, outlook. This study suggests that a theoretical reexamination of the measurement structure of QOL is warranted.     

The Course of Quality of Life and Its Predictors in Nursing Home Residents With Young-Onset Dementia

ObjectiveTo explore the course of quality of life (QoL) and possible resident-related predictors associated with this course in institutionalized people with young-onset dementia (YOD).DesignAn observational longitudinal study.Setting and ParticipantsA total of 278 residents with YOD were recruited from 13 YOD special care units in the Netherlands.MethodsSecondary analyses were conducted with longitudinal data from the Behavior and Evolution in Young-ONset Dementia (BEYOND)-II study. QoL was assessed with proxy ratings, using the Quality of Life in Dementia (QUALIDEM) questionnaire at 4 assessment points over 18 months. Predictors included age, gender, dementia subtype, length of stay, dementia severity, neuropsychiatric symptoms, and psychotropic drug use at baseline. Multilevel modeling was used to adjust for the correlation of measurements within residents and clustering of residents within nursing homes.ResultsThe total QUALIDEM score (range: 0-111) decreased over 18 months with a small change of 0.65 (95% confidence interval −1.27, −0.04) points per 6 months. An increase in several domains of QoL regarding care relationship, positive self-image, and feeling at home was seen over time, whereas a decline was observed in the subscales positive affect, social relations, and having something to do. Residents with higher levels of QoL and more advanced dementia at baseline showed a more progressive decline in QoL over time. Sensitivity analyses indicated a more progressive decline in QoL for residents who died during the follow-up.Conclusion and ImplicationsThis study shows that although overall QoL in nursing home residents with YOD was relatively stable over 18 months, there were multidirectional changes in the QoL subscales that could be clinically relevant. Higher levels of QoL and more advanced stages of dementia at baseline predicted a more progressive decline in QoL over time. More longitudinal studies are needed to verify factors influencing QoL in YOD.     

Quality of life and temperament factors in schizophrenia: Comparative study of patients,their siblings and controls

This study aimed to determine which temperament factors are associated with quality of life (QOL) in schizophrenia based on a triplet design comparing patients with their non-affected siblings and healthy control subjects. Forty-seven DSM-IV clinically stable schizophrenia outpatients, 47 non-affected siblings, and 56 non-patients matched for gender and age were evaluated using the Tridimensional Personality Questionnaire and the Quality of Life Enjoyment and Life Satisfaction Questionaire. As expected, schizophrenia patients reported significantly poorer QOL in most specific domains and in general. They also revealed significantly higher scores on harm avoidance and scored lower on reward dependence, than both their siblings and controls. Tridimensional Personality Questionnaire temperament factors revealed no differences between the controls and the siblings. When differences between patients, their siblings and controls were adjusted for gender, age at examination, and education, ANOVA demonstrated that temperament factors contributed to poor satisfaction with physical health, social relationships and subjective feelings in schizophrenia patients. Harm avoidance was associated with general QOL independent of severity of psychopathology. Thus, this study suggests that temperament factors that are not necessarily part of the deterioration process of the illness are associated with the quality of life of schizophrenia patients. These and other non-illness related factors should be considered when evaluating quality of life outcomes in intervention studies.     

Perceptions of the quality of life for the adolescent with a chronic illness by teachers,parents and health professionals: a Delphi study

AIMS: The perceptions that teachers, parents and health professionals have on the relative importance of different aspects of quality of life (QOL) for the adolescent with a chronic illness were explored using a three-round Delphi study. METHODS: The first round questionnaire identified the level of importance each panel attached to 16 aspects relating to QOL. Panellists were also encouraged to provide additional comments on why they felt a particular item was important. In round two, panellists were asked to prioritize the items in order of importance, whereas round three attempted to achieve consensus among each of the three panels. RESULTS: Differences between and within panels in the prioritization of items in round one and round two were evident. However, consensus was achieved in round three, except for the prioritization of very important items by the panel of teachers. Items identified by all three panels as extremely important included the adolescent's attitude, family relationships and friendships with the same age group. Themes to emerge from the qualitative responses to the open-ended questions included the perception of the chronically ill adolescent 'not wanting to be different' and the importance of a 'positive attitude'. The majority of participants also perceived adolescents with a chronic illness as having worse QOL than their healthy counterparts. CONCLUSIONS: By increasing the awareness among the different groups of the impact of chronic illness on various aspects of adolescent QOL, the overall care and support of those adolescents could be improved. Further studies should also be undertaken to explore the views of the chronically ill adolescents themselves.     

Quality of life among diabetic patients in Swedish primary health care and in the general population: comparison between 1992 and 1995

To assess change over time in health-related quality of life (HRQoL) in diabetic patients in primary health care and differences to general Swedish population samples, 341 diabetic subjects in 1992 and 413 in 1995, aged 20–84 years, were chosen from three community health centres (CHCs) in the Metropolitan Stockholm area and compared to controls matched by age and sex in randomly selected samples of 2,366 subjects in 1991 and 2,500 in 1995 from the general population. HRQoL was assessed by the Swedish Health-Related Quality of Life Survey (SWED-QUAL), adapted from the Medical Outcomes Study, which measures aspects of physical, mental, social and general health in 13 scales. Information on diabetic and general medical data were extracted from the medical records at the CHCs. HRQoL was lower in diabetic subjects compared with the general population in both 1992 and 1995 in all scales except family functioning and marital functioning. The level of HRQoL did not change significantly between the diabetic samples, but decreased in the population samples, making the difference compared to diabetic patients smaller in five of the scales. The most significant predicting factors for the SWED-QUAL results in diabetic patients in 1995 were the vascular and non-vascular co-morbidity.