Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice

ABSTRACT

Objective: The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL).

Method: From eight European countries 451 people with dementia and their carers participated. Needs were measured with the Camberwell Assessment of Need for the Elderly. QOL was measured with the QOL-AD, and carer quality of life was measured with the CarerQol. The relationship between needs and QOL was analysed with multiple regression analyses.

Results: Needs were expressed in the domains of psychological distress, daytime activities, company and information. People with dementia rated their unmet needs significantly lower than their carers: the mean number of self-rated unmet needs was 0.95, whereas the mean proxy ratings were 1.66. For met needs, the self-rated mean was 5.5 and was 8 when proxy-rated. The level of needs reported was negatively associated with QOL for both.

Conclusion: The study results show that informal carers reported almost twice as many needs as people with dementia. The domains in which needs are expressed should be the primary focus for interventions to support QOL. The perspectives of people with dementia are informative when identifying needs.     

Using carer biographical narratives to explore factors involved in proxy reporting of quality of life in people with dementia

Objectives: Quality of life is an important focus of research on dementia, with interest in direct reports of people with dementia and proxy reports of their carers. By exploring the subjective perspectives of unpaid family carers and paid care workers, this study aims to understand how carers construct meaning in narratives about quality of life with dementia.

Method: A case-centred approach involved biographical narrative interviews with 10 carers to explore what was important for people with dementia to have a good quality of life. Detailed narrative analysis attended to the linguistic and structural features of accounts to consider how dementia is conceptualised by carers in the framing of quality of life.

Results: An individual's perception of how dementia impacts on awareness and behaviour was central to their understanding of quality of life. Carers who constructed dementia as a loss of skills and abilities were able to represent quality of life in positive terms despite the challenges of dementia. Carers who constructed dementia as eroding identity represented quality of life less positively and centred on their own means of coping with a challenging care situation.

Conclusion: Findings highlight the importance of helping carers develop positive constructions of quality of life that are associated with understanding dementia as a loss of skills and abilities, rather than as a loss of self. Engaging with subjectivity in carers’ biographical narrative accounts is important in the development of quality of life assessment to understand the meanings and emotions that underlie proxy perspectives.     

Using the WHOQOL-BREF in persons with dementia: a validation study

Increasing evidence suggests that persons with early dementia can give reliable and valid assessments about their own quality of life (QOL), thereby improving accuracy, and reducing the need for proxy informants. The objective of this study was to examine QOL in persons diagnosed with dementia (Diagnostic and Statistical Manual of Mental Disorder-IV) using a battery of subjective assessments including the new World Health Organization Quality of Life (WHOQOL-BREF). Persons with mild-to-moderate dementia (n=104) were recruited and interviewed at 6 Spanish centers to obtain sociodemographic information, health perceptions, depressive symptoms (Geriatric Depression Scale 15-item version), functional ability (Barthel Index), generic QOL (WHOQOL-BREF), and specific QOL (DEMQOL-28). Analysis was performed using classical psychometric methods. Internal consistency reliability for the WHOQOL-BREF domains ranged from moderate (0.54 for social) to good (0.79 for psychological). Test-retest reliability (intraclass correlation) ranged from moderate (0.51 for psychological) to good (0.70 for physical). Associations were confirmed between WHOQOL-BREF domains with DEMQOL-28, Geriatric Depression Scale 15-item version, and Barthel dimensions. With regard to contrasting groups' differences, WHOQOL-BREF scores significantly differentiated between healthy and unhealthy and depressed and nondepressed participants. This study is the first to report on the use of the WHOQOL-BREF in persons with mild-to-moderate dementia. These results indicate that it is a useful tool in assessing these groups, as it includes important dimensions commonly omitted from other dementia measures.     

Factors associated with the quality of life of family carers of people with dementia: A systematic review

IntroductionFamily carers of people with dementia are their most important support in practical, personal, and economic terms. Carers are vital to maintaining the quality of life (QOL) of people with dementia. This review aims to identify factors related to the QOL of family carers of people with dementia.MethodsSearches on terms including “carers,” “dementia,” “family,” and “quality of life” in research databases. Findings were synthesized inductively, grouping factors associated with carer QOL into themes.ResultsA total of 909 abstracts were identified. Following screening, lateral searches, and quality appraisal, 41 studies (n = 5539) were included for synthesis. A total of 10 themes were identified: demographics; carer–patient relationship; dementia characteristics; demands of caring; carer health; carer emotional well-being; support received; carer independence; carer self-efficacy; and future.DiscussionThe quality and level of evidence supporting each theme varied. We need further research on what factors predict carer QOL in dementia and how to measure it.     

An overview of the LASER-AD study: A longitudinal epidemiological study of people with Alzheimer's disease

Abstract

Research into the epidemiological, clinical characteristics and economic impact of dementia is critical to increase understanding and better inform care and policy, and empower people with Alzheimer's disease (AD) and their families to make preparations and timely decisions about accommodation, care and treatment. The LASER-AD longitudinal study of people with AD and their carers has contributed to our understanding of the progression, characteristics and costs of the disease, and to developing tools that help detect dementia earlier, and screen and identify problems experienced by carers. Our work on quality of life shows that even those with severe dementia can report this meaningfully, although family proxy ratings of quality of life do not necessarily mirror the views of the individual. Despite the impact of the disease process, people with AD experience well-being in adversity and still live fulfilling lives. The study highlights the high prevalence and severity of neuropsychiatric symptoms, carer anxiety, depression and abusive behaviour. It informs future directions for possible interventions, in particular the central role of carer coping strategies in predicting carer mental illness. Current research is building on our findings, which have also been used to inform national and international plans for managing people with dementia and their carers.     

Patient and proxy measurement of quality of life among general hospital in-patients with dementia

Background: We aimed to investigate quality of life ratings among people with varying severity of dementia and their carers, recruited in general hospital.

Method: We recruited 109 people with dementia, and their proxies (carers), from psychiatric referrals of inpatients in two general hospitals in England. From patients, we gathered data on quality of life (QoL-AD and EQ5-D) and depressive symptoms, and from proxies we gathered data on patient quality of life (Proxy QoL-AD and EQ5-D), severity of dementia, activities of daily living, physical illness and depressive symptoms, and on carer stress.

Results: Completion rates for both measures were progressively lower with increasing dementia severity. Patients rated their quality of life more highly than proxies on Qol-AD (patients?=?32.2, CI?=?30.7–33.7, proxies?=?24.7, CI?=?23.8–26.0, p?p?p?=?0.003) and more severe dementia (p?=?0.019) were associated with ratings, while for proxy QoL-AD, only more severe dementia (p?=?0.039) was associated with ratings. Lower patient EQ-5D scores were independently associated only with carer stress (p?=?0.01). Lower patient QoL-AD scores were associated with patient depression (p?=?0.001), impaired activities of daily living (p?=?0.02) and proxy psychiatric symptoms (p?=?0.002).

Conclusions: Among patients with moderate to severe dementia in general hospital, proxy measures of quality of life are the only practical option. Patients and proxies appear to have very different concepts of quality of life in dementia.     

Validation of the Brazilian version of the quality of life scale for patients with Alzheimer's disease and their caregivers (QOL-AD)

Quality of life (QOL) has been extensively studied in clinical trials and in research on chronic degenerative diseases and dementia. The aim of this study was to assess the reliability and construct validity of the Brazilian version of the QOL scale in Alzheimer's disease (AD; QOL-AD). The QOL-AD was administered to 60 patients with mild or moderate AD and to their caregivers. The construct validation was accomplished through correlations amongst total scores of patients’ and caregivers’ reports on patients’ quality of life (PQOL and C-PQOL, respectively), and data related to cognitive impairment, depressive symptoms, functional performance, behavioral disturbances and a generic instrument of quality of life (WHOQOL-brief), as well as correlation of total score of caregivers’ reports on their own quality of life (CQOL) with the measurements cited above, QOL-AD patient reports, and depressive symptoms. The reliability was high for PQOL, C-PQOL, and CQOL versions (Cronbach's alpha = 0.80, 0.83, and 0.86, respectively). We observed significant correlations in the construct validity of all three versions regarding the variables associated with the disease and also with WHOQOL-brief. The scale took, on average, six min for each version. The results indicate reliability and construct validity of the Brazilian version of the QOL-AD in the studied sample.     

Impact of an activities-based adult dementia care program

The investigators studied over one year the impact of a newly established once-a-week activity-based day care program for dementia patients combined with 17 educational sessions for caregivers held at the same facility. Outcome measures were patient and caregiver quality of life (QOL), patient behavioral disturbance, and use of community-based resources. Of the 37 enrollees, 3 chose not to start the program and 13 dropped out before the end of one year, largely due to health-related issues. Of the initial group, 21 attended for the entire year. The average patient Mini-Mental State Exam (MMSE) score at entry was 16, indicating a moderate level of dementia. Average score on the CERAD Behavior Rating Scale for Dementia (BRSD) was 30.1, indicating a mild level of behavioral disturbance. Attendance at day care was 91%; at the caregiver educational sessions, 74%. Patient and caregiver enthusiasm for the program was high and all wanted to continue attendance beyond the study period despite the fact that patients reported no change in QOL. Caregivers rated patients as having significantly less QOL, and rated their own QOL as unchanged. Symptomatic patient behaviors, as measured by the BRSD, increased significantly over the period of study. Caregivers reported greater use of community resources.     

How do patients with Alzheimer disease rate their overall quality of life?

OBJECTIVE: The authors asked how Alzheimer disease (AD) patients assess their overall quality of life (QOL) and sought to determine the characteristics associated with this assessment. METHODS: The authors performed a cross-sectional survey of 193 persons with mild-to-severe-stage AD in a University Memory Disorders Clinic using a single-item self-assessment of overall QOL. RESULTS: The 181 of 193 patients (94%) able to complete a single-item QOL self-rating had less severe dementia than patients not able to complete, but some had Mini-Mental State Exam scores as low as 0. Most patients rated their QOL as "good" (35%) or "very good" (36%). Latino patients, patients with less education, and depressed patients were more likely to rate their QOL lower. Among patients able to estimate how they thought their family caregiver would rate their QOL (N=173; 90%), there was moderate agreement between this estimate and their self-ratings. CONCLUSION: A single-item global rating of patient QOL could prove useful in assessing QOL of most mild-to-severe-stage AD patients. Affective impairment, more than cognitive or functional impairment, drives this assessment. Screening for and addressing depressive symptoms could improve AD patients' QOL. Despite impairments in insight, patients see a difference in how their caregivers would rate their QOL.     

Development and evaluation of a health-related quality of life questionnaire for the elderly with dementia in Japan

OBJECTIVES: The purpose of this study was the development of the quality of life (QOL) questionnaire for dementia (QOL-D) in Japan. METHODS: We performed a questionnaire survey of QOL assessment in elderly patients with dementia in Japan, and developed QOL-D. RESULTS: The final version consists of only 31 items grouped into six response sets, each with its own scale. Reliability is good to excellent, and validity is, to some extent, established. The six domains of health-related QOL are divided into two groups. One is the positive and the other is the negative aspects of health-related QOL. The positive aspects have been shown to correlate positively with cognitive function and activities of daily living (ADL) score, whereas the negative aspects have not. The concept of QOL for elderly patients with dementia in Japan is similar to that in Western countries. CONCLUSION: We demonstrated that QOL-D is a reliable and valid instrument for QOL assessment in elderly patients with dementia in Japan.     

Health-related quality of life (HR-QOL) in nursing home residents with dementia: Stability and relationships among measures

Assessing QOL in nursing home residents with dementia is potentially unreliable or invalid due to their reduced ability to understand and respond to test items. This study measured aspects of health-related QOL (cognition, activities of daily living [ADLs], pain, depression, frequency of problem behaviours, and nursing home satisfaction) in nursing home residents with dementia. The purpose of this analysis was to examine the stability of the measures over time, possible relationships between the measures, and possible differences among proxy and resident responses. Six nursing homes provided the setting for the testing. A total of 105 residents with dementia and 90 nursing assistants participated. Results showed stability over time for all measures. Cognition was positively correlated with ADL ability, and negatively correlated with problem behaviours. Nursing assistants' reports of resident depressive symptoms were positively correlated with their reports of resident problem behaviours. Residents' own reports of depressive symptoms were negatively correlated with nursing home satisfaction. There was no relationship between resident self-reports and nursing assistant proxy reports of depressive symptoms at either testing period.     

Comorbid psychosocial symptoms and quality of life in patients with dementia.

OBJECTIVE: The authors examined the association between treatable comorbid psychosocial symptoms and quality of life (QOL) in patients with dementia. In an effort to develop a more comprehensive understanding of this relationship, this study included both patient reports of their QOL and caregiver reports of patient QOL. METHODS: Eighty-nine dyads, consisting of a community-residing veteran with dementia and his family caregiver, were interviewed once to determine the correlation between patient QOL and depression, functional disability, pain, and agitation. RESULTS: Higher patient-rated QOL was significantly associated with lower patient depression. Higher caregiver-rated patient QOL was associated with lower caregiver depression and higher patient functional status. Agitation was not related to patient-rated or caregiver-rated patient QOL. CONCLUSIONS: Authors discuss the psychometric and conceptual implications of possible differences between self- and other-ratings of QOL, and treatment implications for caregiver-education interventions.     

Determinants of quality of life in young onset dementia – results from a European multicenter assessment

ABSTRACT

Background: Promoting adaptation, improving well-being and maintaining an optimal quality of life (QOL) is an important aspect in dementia care. The purpose of this study was to identify determinants of QOL in young onset dementia, and to assess differences in QoL domains between people with Alzheimer's disease (AD) and frontotemporal dementia (FTD).

Methods: In total 135 persons with AD and 58 persons with FTD were included from two prospective cohort studies. QOL was assessed with the proxy reported quality of life in Alzheimer's disease questionnaire (QoL-AD). Possible determinants were explored using multiple linear regression and included sociodemographic variables, diagnosis, dementia severity, disease awareness, neuropsychiatric symptoms, met and unmet needs and hours of personal and instrumental care. Differences between QOL domains in people with AD and FTD were calculated using Mann-Whitney U tests.

Results: Lower QOL was associated with more depressive symptoms, lower disease awareness, and a higher amount of needs, both met and unmet. People with AD scored lower on the memory and higher on the friends' subscale. No differences were found for the other items.

Conclusion: This study demonstrates a unique set of determinants of QOL in AD and FTD. Interventions directed towards these specific factors may improve QOL.     

To tell or not to tell: on disclosing the diagnosis of dementia

Research suggests there has been a cultural change in the disclosure of diagnosis with most evidence held in cancer literature. This article reviews how disclosure of diagnosis relates to the field of dementia. Practitioners' attitudes and practice are being discussed, as are the attitudes and views of carers, peer groups, and patients. Practitioners show great variations in practice, with only around 50% of clinicians regularly telling patients with dementia their diagnosis. The majority of carers also appear to prefer the diagnosis to be withheld from the patient with dementia. However, most practitioners and carers would wish to know themselves if they had the illness. Although in contrast, studies on the views of elderly peer groups show that the vast majority wishes to be fully informed, views of patients with dementia regarding the area of disclosure are still lacking. Factors influencing the decision to disclose the diagnosis, including the degree of certainty of the diagnosis of dementia, the degree of insight of the patient, and the severity of the dementia, are investigated. The advantages and disadvantages of disclosure and the ethical issues are examined, as well as when or whether and how to disclose the diagnosis of dementia. Flexible guidelines regarding the process of disclosure are introduced.     

脑卒中后生活质量量表3.0代理人版中文版的测试及评价

背景对于卒中的幸存者来说,生存质量是患者对于自身健康、生活满意程度、物理功能的主观评定.对于那些不能自己完成量表的卒中患者,我们可以尝试替代测量.然而迄今还没有学者将QOL的代理人量表引入中国.我们的研究目的是编译脑卒中生存质量影响量表(SIS 3.0)代理人版本,考察中文版的信度、效度和反应度,探讨代理人代替病人测试生存质量(QOL)的可行性.方法翻译(将原量表译成中文)和回译(将译文译回英文,与原文比较)原量表后,并作适当改进,然后对量表作心理学考评.选择10对病人及其代理人进行初试,再另选231对病人及代理人用于正式研究.病人的入选条件年龄＞18岁;脑卒中患者(包括脑出血和脑梗死);脑卒中的诊断符合WHO 诊断标准;且都有CT/MR证据.排除条件为TIA;卒中前有永久性残疾;严重的合并症(Ⅲ-Ⅳ级心衰,必须血液透析,严重的肌肉骨骼疾患影响物理功能,癌症,活动期精神病或痴呆,AIDS).代理人的入选条件年龄＞18岁;认识病人至少1年;每周与病人会面的次数至少1次,每次见面的时间至少1小时.排除条件精神状态简易速检表(MMSE)量表评分＜16分.对这些病人和代理人进行一系列量表的测试,包括SIS 3.0代理人版中文版,和其他公认的用于做测评工具的量表,包括医疗结局研究简表(medical outcomes study form 36, MOS SF-36)的中文版、Barthel指数(Barthel Index, BI)、汉密顿抑郁量表(HAMD)考察各个领域的标准效度.使用牛津残障评分(OHS)作为分组依据来考察SIS 3.0的反应度.我们选择了量表完成率和完成量表的时间两个指标来考察可行性;选用分半信度和克朗巴赫系数(α)来考察信度;选用内容效度、标准效度、结构效度来考察效度;通过比较不同残疾程度的病人的SIS 3.0得分来考察反应度.此外,我们比较了病人同代理人得分的差异.结果该中文版量表可行性好.分半信度和α系数均大于0.8,表明信度好.经专家评审后,认为表的内容与测试目的吻合.此外,量表各个测试条目得分与所属领域总分的Pearson相关系数在0.620～0.969之间,P值＜0.01.因子分析结果表明量表的结构与设计时的构想基本吻合.因为目前缺乏"交流"领域金标准,因此没有作该领域的标准效度检验.剩余的七个领域与已知公认量表的相应领域高度相关,Pearson相关系数＞0.5,P=0.000,具有良好的相关性,说明标准效度好.牛津残障评分(OHS)分组下的单因素方差分析显示量表可以区分不同残疾程度的病人,且随着病人残疾程度的加重,QOL评分总体呈下降趋势,表明反应度好.使用配对t检验和组间相关系数,分领域考察病人和代理人得分的差异,结果表明无统计学差异.结论 SIS 3.0代理人版中文版的信度、效度和反应度是满意的,用代理人代替病人进行QOL研究是可行的.     

Evaluation of the dementia carers situation in Russia

OBJECTIVE: The objective of this study was to assess the situation of carers in Russia and to determine predictors of their quality of life and psychological morbidity. DESIGN/SETTING: Attendees of the geriatric department in a mental hospital and referrers to an out-patient geriatric unit who had a diagnosis of dementia and their principal carers formed the study group. CARERS: The total sample was 83, 15 males and 68 females, aged from 19 to 72 years. The relationships to the demented person were: daughters (52%); spouses (8%), sons (12%) and others (28%). MEASURES: Structured questionnaire, Quality of Life Questionnaire (WHOQOL BREF), and General Health Questionnaire (GHQ-12) were administered. RESULTS: The results of this study demonstrate the low level of service input most carers have been receiving. A large number of carers do not use services provided by health and social services. The most commonly received service appears to be health services (doctor visits and short-term hospital admission). Aids to daily living from social service were unknown to most carers. Female carers were found to report lower QOL mean scores in G4 (Health in general) and D1 (physical) domain and were significantly more stressed on the GHQ compared to male carers. Daughters were less dissatisfied with the QOL in G4, D1 D3 (social relationship) and D4 (environmental) domains than other relatives. CONCLUSION: The study indicated that carers, especially daughters, of dementia sufferers need more attention from social and health services.     

Assessing quality of life in Taiwanese patients with Alzheimer's disease

OBJECTIVE: To measure differences in patients with Alzheimer's disease (AD) and caregiver assessments of the patients' quality of life (QOL) and to identify the patient characteristics, caregiver characteristics, or patient-caregiver interactions responsible for these differences. METHODS: We recruited consecutive patients with AD and their caregivers from an outpatient clinic of a teaching hospital in Taiwan. Each patient and caregiver rated the patient's quality of life (QOL) using the Quality of Life-Alzheimer's Disease (QOL-AD) questionnaire. Additional measures included the Mini-Mental State Examination (MMSE), Clinical Dementia Rating, Blessed Activities of Daily Living assessment, and the Neuropsychiatric Inventory. Only patients with MMSE score >or= 10 were enrolled. RESULTS: Of the 94 patients enrolled, 81 with reliable caregivers were included. The internal consistency was good within both patient and caregiver reports (alpha=0.83 and 0.79, respectively). The agreement between patient and caregiver QOL-AD reports was moderate (absolute intraclass correlation coefficient: 0.41). Regression analyses indicated that caregiver distress was the most consistent predictor of QOL rating discrepancy between the patient and caregiver, and patient depressive disorder was the most significant predictor of QOL. CONCLUSIONS: Similar to previous studies in different ethnic groups, the QOL perception differed between the Taiwanese patients with AD and their caregivers. Medical professionals should be cautious if they try to use a caregiver-reported QOL to replace the patient-reported QOL among AD patients of mild to moderate severity.