A meta-review of stress, coping and interventions in dementia and dementia caregiving.

BACKGROUND: There has been a substantial number of systematic reviews of stress, coping and interventions for people with dementia and their caregivers. This paper provides a meta-review of this literature 1988-2014. METHOD: A meta-review was carried out of systematic reviews of stress, coping and interventions for people with dementia and their caregivers, using SCOPUS, Google Scholar and CINAHL Plus databases and manual searches. RESULTS: The meta-review identified 45 systematic reviews, of which 15 were meta-analyses. Thirty one reviews addressed the effects of interventions and 14 addressed the results of correlational studies of factors associated with stress and coping. Of the 31 systematic reviews dealing with intervention studies, 22 focused on caregivers, 6 focused on people with dementia and 3 addressed both groups. Overall, benefits in terms of psychological measures of mental health and depression were generally found for the use of problem focused coping strategies and acceptance and social-emotional support coping strategies. Poor outcomes were associated with wishful thinking, denial, and avoidance coping strategies. The interventions addressed in the systematic reviews were extremely varied and encompassed Psychosocial, Psychoeducational, Technical, Therapy, Support Groups and Multicomponent interventions. Specific outcome measures used in the primary sources covered by the systematic reviews were also extremely varied but could be grouped into three dimensions, viz., a broad dimension of "Psychological Well-Being v. Psychological Morbidity" and two narrower dimensions of "Knowledge and Coping" and of "Institutionalisation Delay". CONCLUSIONS: This meta-review supports the conclusion that being a caregiver for people with dementia is associated with psychological stress and physical ill-health. Benefits in terms of mental health and depression were generally found for caregiver coping strategies involving problem focus, acceptance and social-emotional support. Negative outcomes for caregivers were associated with wishful thinking, denial and avoidance coping strategies. Psychosocial and Psychoeducational interventions were beneficial for caregivers and for people with dementia. Support groups, Multicomponent interventions and Joint Engagements by both caregivers and people with dementia were generally found to be beneficial. It was notable that virtually all reviews addressed very general coping strategies for stress broadly considered, rather than in terms of specific remedies for specific sources of stress. Investigation of specific stressors and remedies would seem to be a useful area for future research.

Cognitive aging: activity patterns and maintenance intentions.

This study examined relationships between cognitive functioning in older people and (1) levels of mental, physical and social activities, and (2) intentions regarding maintenance of cognitive functioning. Participants (N=145) were 70-91 years of age, varied in health status and socio-economic backgrounds. Current cognitive functioning was assessed by psychometric tests and real world problem solving tasks. Crystallized ability was indexed by the National Adult Reading Test (NART). Degree of involvement in mentally demanding activities was positively related to a fluid cognitive factor after effects of age, prior functioning, gender, health, and socio-economic status were accounted for. Social and physical activities were not related to the cognitive measures. Age effects on cognitive functioning were reduced among participants who reported undertaking activities intentionally to maintain cognitive functioning.

Real-world problem solving and quality of life in older people.

OBJECTIVES: This study examined relationships between quality of life (QoL) in older people and cognitive functioning in both abstract and real-world problem solving. DESIGN: Contributions of levels of mental, physical and social activities, self-rated and objective health status, self-rated cognitive functioning, socio-economic status, gender, real-world and abstract problem solving were examined in a regression study of factors related to QoL in older people. METHOD: Participants (N=145) were 70-91 years of age. The current cognitive functioning was assessed by psychometric tests and real-world problem-solving tasks. Prior functioning was indexed by crystallized ability measures. QoL was assessed using the Leiden-Padua questionnaire (LEIPAD), Faces scales and Hospital and Anxiety Depression Scale. A single QoL factor was derived. RESULTS: Simultaneous multiple regressions indicated that QoL was related to real-world but not to abstract problem-solving ability. Separate contributions to QoL were also found for health and self-rated cognitive functioning. CONCLUSIONS: The present study replicates previous findings that abstract problem-solving ability is not related to QoL and supports the hypothesis that real-world or everyday problem-solving ability is associated with QoL in older people.

The link between major risk factors and important categories of admission in an ageing cohort.

BACKGROUND: Record linkage of routine hospital data to population-based research findings presents an opportunity to explore the relationships between classical risk factors and hospital activity. METHODS: The objectives of this study were to examine, in Paisley and Renfrew, the effect of risk factor variables on the likelihood of experiencing an acute hospital admission with six major medical conditions. The subjects were 8,349 women and 7,057 men, aged 45-64 in the early to mid-1970s. The main outcome measures were acute hospital admission with principal diagnosis of: any malignant neoplasm; malignant neoplasm of trachea, bronchus and lung; ischaemic heart disease; respiratory disease; cerebrovascular disease; or diabetes mellitus. RESULTS: Smokers were almost eight times more likely to be admitted with lung cancer and, to a lesser extent, were more likely to be admitted for the other conditions investigated with the exception of diabetes mellitus. Forced expiratory volume was also an independent risk factor for admission with lung cancer and strokes. Higher levels of cholesterol were associated with increased risk of admission with ischaemic heart disease but less with cancer (including lung cancer). With the exception of admissions for cerebrovascular disease, deprivation category was found to have no independent effect on the likelihood of experiencing any of the morbidity outcomes examined. CONCLUSIONS: These data confirm that associations first established between risk factors and mortality outcomes (e.g. smoking and lung cancer) are also found between risk factors and hospital admissions for the same causes. This in itself is unremarkable, but the results are of interest for three reasons. First, they illustrate the potential of record linkage to map the effects of risk factors. Second, they demonstrate the size of the effect risk factors have on the risk of admission. Third, they provide a surprising finding that deprivation category does not act as an independent risk factor for the majority of the categories of admission investigated.

Influence of biological, behavioural, health service and social risk factors on the trend towards more frequent.

OBJECTIVES: To analyse the trend in rising acute hospital admission rates in the Renfrew Paisley MIDSPAN cohort and assess the influence of baseline risk factor data, morbidity patterns, deprivation category and characteristics of GP practice on the increase. DESIGN: Cohort analysis which, using a linked data set covering a 23 year follow-up period, combined original 'risk'-related data with subsequent routine hospital admissions data. A multiple logistic regression model predicted changes in hospital admissions patterns. SETTING: Renfrew and Paisley, two post-industrial towns in Scotland. SUBJECTS: Eight thousand three hundred and fifty four women and 7,052 men, aged 45-64 in the early 1970s. MAIN OUTCOME MEASURES: The contribution that each of the factors investigated made to the likelihood of admission over time. RESULTS: While risk status in middle life, diagnosis reached after admission, deprivation category and characteristics of GP practice influence the absolute chance of being admitted to hospital, changes in these factors do not explain much, if any, of the quite marked increase in admission rates observed during the last 10 year of the follow-up period. CONCLUSIONS: Whatever the reasons for the trend of rising admission, the most likely explanation appears to be a combination of social and health service related factors. For the Paisley-Renfrew cohort, factors like smoking status, FEV1, deprivation category and GP practice remain important predictors of admission throughout the time period but changes in these factors explain little of the rising trend in admissions.

Hospital use by an ageing cohort: an investigation into the association between biological, behavioural and social risk markers and subsequent hospital utilization.

BACKGROUND: The aims of the study were to describe the pattern of hospital utilization (acute and mental health sectors) of the Paisley-Renfrew MIDSPAN cohort and assess the influence of biological, behavioural and social 'risk factors' (established at the time of screening) on subsequent hospital admissions. METHOD: A cohort analysis was carried out in Paisley and Renfrew, two post-industrial towns in West Central Scotland. This used a linked data set covering a 23 year follow-up period to combine original 'risk'-related data with subsequent routine hospital admissions data. The subjects were 8349 women and 7057 men, aged 45-64 in the early to mid-1970s, and representing approximately 80 per cent of the eligible population. The main outcome measures were patterns of hospital utilization (acute and mental health sectors), 'any acute hospital admission', 'a serious acute hospital admission' and 'death' (relative risks of each outcome were calculated for all risk factors). RESULTS: The following patterns of hospital utilization were found. Only 5 per cent experienced a mental health admission but mean stay was long (265 bed days per cohort member admitted). In contrast, 79 per cent experienced at least one acute hospital stay. The age-specific proportions of cohort members requiring admission increased over time but the growth in acute episodes was even higher (suggesting increasing rates of multiple admission). For non-survivors, 42 per cent of all acute episodes (55 per cent of bed days) took place during the 12 months before death. Analysis of risk factors (using Cox's proportional hazards model) of 'any admission' and 'a serious admission' showed forced expiratory volume (FEV1), age, sex, smoking status, blood pressure, blood sugar, body mass index, cholesterol and deprivation category to be important predictors. CONCLUSIONS: Despite the desirability of alternative settings of care for the chronically ill and dying, a high proportion of hospital bed days were required near the time of death. The absolute size of the demand for hospital services within the cohort was strikingly large and increasing over time. Strategies to address the tide of rising admissions will have to confront the increasing proportion of individuals requiring admission as well as the growth in multiple admissions. Those who were at higher risk of admission were the older members of the cohort (especially men), those with low FEV1, smokers, those who were underweight or obese, the small number with abnormal levels of blood sugar, those with high blood pressure and those who lived in the most deprived areas. Thus, programmes which affect these determinants of ill health may be useful in reducing age-specific admission rates.

Community care for demented and non-demented elderly people: a comparison study of financial burden, service use, and unmet needs in family supporters.

OBJECTIVE: To measure and compare perceived financial burden, use of services, and perceived unmet service needs of supporters of demented and non-demented elderly people. DESIGN: Comparison study of age and sex matched demented and non-demented elderly people and their supporters. SETTING: 25 primary health care teams in Dundee. SUBJECTS: 114 community resident elderly (age over 65) people with dementia, 114 age and sex matched comparators, and the main informal supporter of each elderly person. MAIN OUTCOME MEASURES: Carers' perceptions of financial impact of looking after an old person, service use (from a list of locally available services), unmet service needs, and needs for three types of generic service (help with supervision, housework, or personal care). RESULTS: Financial impact was low, except for extra household expense in the dementia group. There was significantly greater use of mainstream domiciliary and day care services in the dementia group. Dementia was nevertheless associated with a high level of unmet need, mainly for more mainstream support and help with supervision of the elderly person. CONCLUSION: Supervisory care for demented elderly people should be further developed within an expanded domiciliary service to meet supporters needs.

Non-attendance at periodontal clinics: forgetting and administrative failure.

Using a case-control design, non-attenders and attenders at a periodontal clinic were sent postal questionnaires in order to compare the sociodemographic characteristics of non-attenders and attenders. Non-attenders were also asked why they failed to attend. The main reason given was that they had forgotten about their appointment. Administrative error was the second most frequent category of response explaining non-attendance. Differences in sociodemographic characteristics between attenders and non-attenders did not appear to explain non-attendance, apart from car and telephone ownership. Time between notice of an appointment and the way patients received their appointments was associated with non-attendance. Non-attenders viewed their problem as less serious than attenders.

Medical records: practicalities and principles of patient possession.

This review of issues and research is in two parts: 1) practical problems surrounding patient-held records and 2) ethical arguments for and against patient-held records. We argue that research on patient-held records indicates that there are no substantial practical drawbacks and considerable ethical benefits to be derived from giving patients custody of their medical records.

Public knowledge of hospices: a street survey in Glasgow.

A street survey was conducted in Glasgow to find out the level of public knowledge of and attitudes to hospices generally and two local hospices. The level of knowledge was not high, though attitudes to hospices were positive. Those few respondents with unfavourable attitudes had little knowledge of hospices generally and knew little about the local hospices. The factors associated with level of knowledge and attitudes were different for the two local hospices. The media and the collection of money for hospices were the main source of knowledge.

Anticipatory grief: a review.

In this review the term anticipatory grief is defined and described. Misconceptions about the reaction which may have been applied in previous literature are noted and their origin discussed. Empirical studies of the impact of an anticipatory grief reaction on subsequent adjustment are presented, with a discussion of the reasons for their disparate results and suggestions for future research. The relevance to the clinician of the anticipatory grief reaction in both family and professional caregivers is considered.

Expressed emotion in caregivers of the dementing elderly.

This paper presents findings on the association between 'expressed emotion' (EE) and a number of factors previously investigated in relationship to caregivers of the dementing elderly. Frequency of critical comments (expressed emotion) was correlated with a number of supporter and dependent characteristics, variables within the relationship between caregivers and their dementing relatives, and help from professionals. The analysis revealed significant correlations between EE and sex of caregiver, caregivers' psychological well-being, contact with friends and the quality of the relationship between the caregiver and dementing relative. The dementing relatives' level of impairment, age and sex were not significantly correlated with EE, nor was help from the services. Also, those most critical of their dementing relatives were not more likely to express a preference for institutional care.

Senile dementia: factors associated with caregivers' preference for institutional care.

This paper presents findings concerning variables expected to influence the motivation of persons caring for a dementing relative in the community to continue giving care and support. The variables examined in relation to 'preference for institutional care' were those previously examined in relation to supporters' psychological well-being (Gilhooly, 1984). The results indicate that factors within the relationship between supporter and the dependent dementing relative are important determinants of motivation to continue giving support. Other variables significantly associated with advocacy of institutional care included the age of the supporter, supporter's contacts with friends, satisfaction with help from relatives, another dependent relative, and whether or not the supporter was employed. Help from the services and supporters' well-being were not significantly correlated with ratings of preference for institutional care.

The impact of care-giving on care-givers: factors associated with the psychological well-being of people supporting a dementing relative in the community.

The aim of this paper is to present findings concerning a variety of factors expected to influence, either directly or indirectly as mediators, the psychological well-being of persons caring for a dementing relative in the community. The sample included both co-resident and non-resident supporters and the data were collected via a semi-structured interview. Only sex of dependant, sex of supporter, satisfaction with help from relatives, blood/role relationship, duration of care, frequency of visits from a home help and community nurse were significantly correlated with supporters' morale and mental health. The directions of these correlations were, however, not always as expected, e.g. the longer the duration of care-giving the higher the supporters' morale and the better the supporters' mental health. It was interesting to find that level of impairment and help from family and friends were not significantly associated with morale and mental health of supporters.