Demented Relatives Research Articles

Personality of the caregiver influences the use of strategies to deal with the behavior of persons with dementia

Personality of family caregiver is an important factor influencing the caregiver's burden, depression and distress. We now hypothesized that the personality is associated with specific strategies used by family caregivers to deal with the behavioral and psychological symptoms of demented relatives (BPSD). Participants were 98 consecutive persons with dementia and their family caregivers. Assessments included: Personality (NEO-FFI), Burden (ZBI), Depression (CES-D), Cognitive Function (MMSE), BPSD (NPI), Distress (NPI-D), and an open question to identify the strategies used by caregivers when faced with BPSD. Caregivers used different strategies to cope with their relatives' behavior: avoiding conflict; confronting; reassuring; orienting; responding coercively; distracting; colluding; medicating and restricting the movements. Extraversion was the only dimension of caregiver's personality that determined the use of caregiver strategies to deal with BPSD. Extroverted caregivers used the “confronting” strategy less often. Caregiver's personality should be taken into account when designing adapted intervention programs.

Condition of informal caregivers in long-term care of people with dementi.

Caregivers of demented relatives devote their time and attention in order to help the beloved members of the family. Those who are informal caregivers require support in order to avoid being overburdened. Many such caregivers may suffer from chronic health problems, for instance, depression. The aim was to assess the factors of depression in caregivers, and to discover the determinants of depression among informal family caregivers of demented individuals. Forty-one caregivers in the research group were administered a questionnaire which included the caregivers' demographics. Caregiver's level of depression was measured by the scale of the Centre for Epidemiology Scale for Depression. The relationship between depression and demographic features was analyzed. Data were analyzed using STATISTICA 8.1 (StatSoft). Analysis of the results was performed using the Kolmogorov-Smirnov test of normality. Pearson correlation coefficient was also used. Referring to The Centre for Epidemiology Scale for Depression, the average score in the study group was 18 ± 7.49. There was no statistically significant relationship between the level of depression and such factors as caregiver's age, time of care of demented relative, and type of kinship and pain. Although there was no relationship between the level of depression and demographic features, the problem with quality of life, worries and grief which may appear, seemed to be sufficient reason for organizing the prevention of depression for all informal caregivers of persons with dementia.

„UnderstAID – a platform that helps informal caregivers to understand and aid their demented relatives” – assessment of informal caregivers – a pilot study

Introduction. The number of people with dementia increases. Patients are dependent of informal care provided by their family members, especially spouses, children and friends. As the disease progresses caregiving becomes more complex, stressful and demanding. The needs of informal caregivers are related to the lack of professional support in care, including information about the disease, advise of management of its symptoms and social and financial support. It is therefore important to create an information tool which will assist caregivers in their daily work with people with dementia.Aim. The aim of the study was the technical evaluation of the information platform for caregivers of patients with dementia. Material and methods. The study involved 18 caregivers of patients with Alzheimer's disease. The level of GDS scale comprised those between 4 and 7. Platform testing had been carried out from 15 February to 15 March 2015. Evaluation of the platform was made using a technical questionnaire depending on the result of the GDS and the Zarit scale. Results and conclusions. Platform was rated positively by caregivers (average score 4 out of 5) with the exception of a few areas which received an average rating of 3. These areas include: usefulness of the guidance provided for the application (26% of respondents assessed it negatively), ease to find the relevant information (25% negative assessments), application responsiveness (24% negative assessments) and the quality of the media files (23% negative assessments). Respondents assessed the platform positively, although some technical issues need improvement.

Prolonged grief in caregivers of community-dwelling dementia patients.

To estimate the frequency of prolonged grief disorder (PGD) in 90 primary caregivers of patients with dementia who live in the community dwelling in Milan and to identify the relationship between grief intensity (GI) and other caregiver variables; another aim was to clarify the role of the objective cognitive and functional impairment of the patients and the level of deterioration perceived by caregivers. Cross-sectional study. In all, 16.7% of caregivers had PGD. Caregiver variables increasing GI and the risk of developing PGD were burden, anxiety, and some sociodemographic features. The objective level of patient's deterioration was irrelevant for PGD probability/GI, while the deterioration level perceived by the caregiver increased PGD probability and GI. Caregivers of patients with dementia may experience grief symptoms that are associated with low educational level, high level of burden and anxiety, and high perceived deterioration of their demented relatives' cognitive and functional abilities.

The project “understAID” – a platform that helps informal caregivers to understand and aid their demented relatives

“UnderstAID” is a platform that helps informal caregivers to understand and aid their demented relatives. It is an international project initiated by Denmark, Poland and Spain.The aim of the project is to design, and implement the multimedia platform “understAID” to support informal caregivers of dementia patients. The project was launched in April 2013 and is expected to end 36 months later. The project is divided into five tasks concerning the final aim. The aim of task 1 is the management of the project, as well as the exploitation and dissemination of gathered information. Task 2 is meant to define the contents and solutions of the CarePlatform based on the knowledge gained from real-case studies. Demented elderlies from each country (n = 40) suffering from different degrees of dementia were evaluated by formal caregivers and dementia professionals. The aim of task 3 is the development of the social learning interface. Task 4 focuses on the CarePlatform development and system integration. Finally, task 5 assumes testing and validation of the platform. The platform is devised to be available in two versions, namely the light one for mobile appliance and the premium version. Also different activities leading to the popularization of the platform are planned.

Support for families of patients dying with dementia: A qualitative analysis of bereaved family members' experiences and suggestions

To explore and document the needs of family caregivers of patients dying with dementia and to identify how healthcare professionals can adequately support them. We employed a cross-sectional survey containing open-ended questions that were analyzed using qualitative methods. Receiving information about the diagnosis and disease trajectory of dementia is essential for the caregiving families of people dying with the disease. However, at present the communication of information offered by professionals is not experienced as satisfying. Further aspects that require improvement concern issues related to time constraints, as well as practical and emotional support from professionals in the care setting. Family members would also like professionals to better assist them during and after the dying process. Family members face multiple burdens while caring for their demented relatives and need more professional support during the course of the disease trajectory as well as in the terminal phase.

Advance care treatment plan (ACT-Plan) for African American family caregivers: A pilot study

Research is limited on end-of-life treatment decisions made by African American family caregivers. In a pilot study, we examined the feasibility of implementing an advance care treatment plan (ACT-Plan), a group-based education intervention, with African American dementia caregivers. Theoretically based, the ACT-Plan included strategies to enhance knowledge, self-efficacy, and behavioral skills to make end-of-life treatment plans in advance. Cardiopulmonary resuscitation, mechanical ventilation, and tube feeding were end-of-life treatments discussed in the ACT-Plan. In a four-week pre/posttest two-group design at urban adult day care centers, 68 caregivers were assigned to the ACT-Plan or attention-control health promotion conditions. Findings strongly suggest that the ACT-Plan intervention is feasible and appropriate for African American caregivers. Self-efficacy and knowledge about dementia, cardiopulmonary resuscitation, mechanical ventilation, and tube feeding increased for ACT-Plan participants but not for the attention-control. More ACT-Plan than attention-control participants developed advance care plans for demented relatives. Findings warrant a randomized efficacy trial.

Survey in Shanghai communities: the public awareness of and attitude towards dementia

To assess the knowledge of and attitudes towards dementia among Shanghai residents. A 10-item optional questionnaire relating to dementia was developed for the project. Questionnaires were randomly distributed to 1806 families, each family had one respondent. A total of 1531 questionnaires were available. Among them, 45% considered 'dementia is a normal part of ageing' and 29-41% correctly identified the symptoms of mild dementia. Of the respondents, 43% indicated that they would not be ashamed of having a demented relative, and 45% did not think that medical care benefited those with dementia. Subgroups analyses showed there was a wider agreement on the concept 'dementia is a normal part of ageing' in the elderly or the females with primary school education background than the counterpart. According to the educational level, the sequence (from the highest to the lowest) of the proportion of respondents who considered a demented relative to be shameful was as follows: middle school group (60.5%) > primary school group (41.3%) > university group (25.2%); according to age group: adult group (59.8%) > elderly group (37.3%) > youth group (30.2%). There was a higher identification rate of the symptoms of mild dementia in women than in men (P < 0.01). According to the educational level, the sequence (from the highest to the lowest) of identification rate was: university group > primary school group > middle school group; according to age group: elderly group > youth group > adult group. There was a significant difference among groups (P < 0.01). Multivariate regression results suggested that the sex, educational level and age had an influence on the concept of 'dementia is part of normal ageing'; the feeling of shame of having demented relatives was influenced by the educational level and age. Lack of correct knowledge about dementia and discrimination of dementia are highly prevalent among urban residents in Shanghai.

What is the role of the general practitioner towards the family caregiver of a community-dwelling demented relative?

Objective. To identify the attitudes and perspectives of the family physician towards the caregivers of demented relatives and to describe the caregivers’ satisfaction. Design. Systematic review. Subjects. The studied population consisted of dementia family and their general practitioners. Main outcome measures. Outcome measures were the generic tasks and skills of the general practitioner to improve home care from the perspective of the family caregiver. Caregivers were assessed on satisfaction regarding the care provided by their general practitioner. Results. The general practitioner is aware of his/her skills and limits in all aspects of dementia care and his/her role towards the family caregiver. They also acknowledged the importance of an adequate diagnostic process, but they felt uncomfortable disclosing the diagnosis to both the patient and the caregiver. They reported having more confidence in treatment matters than in diagnostic stages. Caregivers’ reports on the attitude of their general practitioner in the diagnostic process were rated from helpful to poorly empathized. General practitioners found themselves to be highly involved in dementia home care, but caregivers rated their involvement to be insufficient. The lack of appropriate communication skills of general practitioners was also not appreciated by the caregivers. A lack of time and reward was considered by the general practitioner to be a major obstacle in dementia care. Conclusion. The key role of general practitioners as care providers and care planners is consolidated by the family caregivers’ confidence in their skills. Clear guidelines from early diagnosis to adequate referrals should improve the ability of the general practitioner to support these time and energy-consuming home-care situations. Intervention studies addressing the gaps in the skills of the general practitioners in dementia home care management could be helpful in supporting the family caregiver.

The relation between care giving and the mental health of caregivers of demented relatives: A cross-sectional study

Background: Increasing numbers of family caregivers are confronted with caring for a demented, community-dwelling relative. Living with, caring for, and supervising a demented older relative places a heavy burden on the involved family members. In particular, primary caregivers report increased strain, feelings of depression, and decreased general wellbeing as a direct consequence of care giving. Since the most common cause of failure of a home-care situation appears to be caregiver burnout, detecting critical, negative changes in the wellbeing of the caregiver is important. Methods: In a nationwide, cross-sectional study by the Belgium Social Security Board, a population of demented older patients and their care-giving relatives was investigated. The care situation and characteristics of demented, older patients and their caregivers were inventoried, and their effects on the wellbeing of caregivers were evaluated. Results: Approximately 30% (n = 28) of caregivers of demented, older relatives were depressed. Depression occurred independently of objective care characteristics and the mental and physical state of the demented patient. Rather, it was related to coping mechanisms and to the perceived burden reported by the caregiver.Conclusion: Offering support and counsel to caregivers is an important issue in efficiently maintaining home-care situations.

Altersarbeit, Alterseinkommen und Altersstruktur in Deutschland seit dem neunzehnten Jahrhundert

Abstract One of the most prominent features of modern German society since the late nineteenth century has been the emergence of retirement as a distinctive phase of life. This article focuses on three key aspects: the evolution of retirement as the last phase of the life course; the creation of a multi-pillar system of retirement income; and the age structure of German society. Traditionally, the life course of most men and women was comprised of a short period of education, a long working life and, if life was not ended by a premature death, a brief period of disability. A new life course model was initiated when a social security pension system was established in Germany in 1889. The social security pension system and state pension schemes were conceived to provide disability or old age pensions for a short period of disability at the end of the life course, when people were physically or mentally unable to work. With the evolution of the welfare state, the last phase of the life course came to be redefined not as disability, but as retirement: a period of leisure earned by a productive working life. Disability might still wait at an advanced old age, but before that many years of retirement should be enjoyed in good health. Concurrent with the new life course model, the labour force participation of the older population declined. Retirement requires income. In Germany, the social security pension system and state pensions still provide the bulk of retirement income. In recent years, however, the government has encouraged a change to a multi-pillar system where public transfers from government or social security are supplemented by corporate pension systems and income from assets, the elderly. The rise in life expectancy and the decline of the birth rate have resulted in an ageing German society. As the population ages, the maintenance of an adequate standard of living for the older population requires an increasing share of the nation′s income. The multi-pillar system enhances income security in old age, but in the long run adequate retirement incomes depend on full employment and economic growth. An unresolved issue is the future of family caregiving in an ageing society. If more people opt for a life without children, there will, in a not too distant future, be a growing number of elderly people who cannot rely on family members to take care of dependent or demented relatives. The consequences are either vastly increased expenditures for professional care or a reduced standard of caregiving.

American Gastroenterological Association Future Trends Committee Report: Effects of Aging of the Population on Gastroenterology Practice, Education, and Research

American Gastroenterological Association Future Trends Committee Report: Effects of Aging of the Population on Gastroenterology Practice, Education, and Research

APOE Genotype, Family History of Dementia, and Alzheimer Disease Risk

Both family aggregation and apolipoprotein E (APOE) epsilon4 allele are well-known risk factors for dementia, but the relation between these two factors remains unclear. To explore whether the risk of dementia and Alzheimer disease (AD) due to a positive family history is explained by APOE genotypes. Community-based cohort study. The Kungsholmen district of Stockholm, Sweden. A total of 907 nondemented people 75 years or older, followed up for 6 years to detect incident dementia and AD cases according to the diagnostic criteria of the Diagnostic and Statistical Manual of Mental Disorders, Revised Third Edition. Risk of dementia and AD by Cox proportional hazards models after controlling for several potential confounders. Subjects who had at least 2 siblings with dementia were at an increased risk of AD. Individuals with both APOE epsilon4 allele and at least 2 affected first-degree relatives had a higher risk of dementia and AD compared with those without these 2 factors. Similar results were obtained for history of dementia separately in parents or siblings. Among the epsilon4 allele carriers, subjects with 2 or more first-degree demented relatives had increased risk of dementia and AD, whereas no increased risk was detected among non-epsilon4 carriers. Family history of dementia was associated with an increased risk of dementia and AD in this very old population, but only among APOE epsilon4 carriers. This suggests the existence of other genetic or environmental risk factors that may be active in the presence of the APOE epsilon4 allele.

Caring for a demented relative at home: Effects on parent–adolescent relationships and family dynamics

Informed by a family systems perspective, the main purpose of this study was to identify changes in parent–adolescent relationships and in family dynamics when a family member with Alzheimer's or similar dementia moves into the household. The data, based on in-depth interviews with 17 adolescents, revealed that the care situation induces both positive and negative changes in family relationships. On the one hand, adolescents showed considerable empathy and respect for the parent who is the primary caregiver and reported that joint involvement in caregiving enhances adolescent–parent bonds. On the other hand, the adolescents lamented restrictions on their own and the family unit's activities due to the care situation. They also complained about spillover of caregiver stress on other family relationships and about parent-caregivers' focus of attention on the care recipient. These negative features strongly influenced adolescents' adaptation to the care situation. Overall, the results confirm the importance of a family systems perspective for understanding of and intervention in family caregiving for demented relatives. Family life educators should convey the importance of family dynamics in caregiving situations to their audiences, and family practitioners should be aware that an exclusive focus on the primary caregiver's problems may hamper adaptation of other family members (and especially adolescents) who are involved in the care situation.

Caring for relatives with dementia: willingness-to-pay for a reduction in caregiver’s burden

Informal care constitutes a large percentage of total care for patients with dementia. Providing care for cognitively impaired individuals is stressful and demanding. This study applies the contingent valuation method to estimate the willingness-to-pay of informal caregivers for a reduction of their burden. In 109 face-to-face interviews, caregivers with demented relatives stated their willingness-to-pay for three hypothetical treatments of the patient. Results suggest that caregiver’s disutility from burden is considerable. On average, caregivers are willing to pay 2200 Swiss Francs (US$1500) per year for a reduction of their burden level from moderate to low. Therefore, interventions which combat the negative consequences of caregiving have great potential to yield a social net benefit.

The stress process of family caregiving in institutional settings.

This study adapts the Stress Process Model (SPM) of family caregiving to examine the predictors of depression in a sample of caregivers (n = 133) with demented relatives residing in suburban skilled nursing facilities. We interviewed family caregivers of family members residing in skilled nursing homes using a variety of measures to assess primary stressors, secondary strain, nursing home stressors, and caregiver depression. We used block-wise regression analyses to determine the predictors of caregiver depression. Results indicated that positive resident adjustment to placement was best predicted by the closeness of the resident-caregiver relationship and nursing home stressors. Caregiver strain, resident adjustment, and nursing home stressors best predicted caregiver adjustment. In turn, the best predictors of caregiver depression included caregiver age, caregiver adjustment to the nursing home, and nursing home stressors. These results suggest that caregiver depression is closely linked to how well both the resident and caregiver adjust to the nursing home environment. Results also indicate that by broadening the SPM to include stressors common to the nursing home experience, researchers will be able to understand more clearly the specific components of the stress process that may lead to depression in family caregivers of persons living in nursing homes.

Empirical verification of a theoretical model derived from the Roy adaptation model: findings from five studies.

This article presents a theoretical model derived from the Roy adaptation model and the findings of an empirical verification of this model from five studies. Four groups of subjects were included in the studies: informal caregivers of demented relatives at home, informal caregivers of psychiatrically ill relatives at home, professional caregivers of elderly institutionalized patients, and aged spouses in the community. In at least three studies, a number of theoretical propositions derived from the Roy adaptation model were supported using LISREL VIII, thus adding credence to some tenets of Roy's model. Particularly, the focal stimulus of perceived stress, the contextual stimulus of conflicts in the exchange of social support, and one component of the coping mechanisms (the passive/avoidance coping strategies) were positively linked directly or indirectly with psychological distress, which is an indicator of adaptation in the self-concept mode. Given their importance, these elements should be considered in the development of a middle-range theory of psychological adaptation derived from the Roy adaptation model.

Major strain and coping strategies as reported by family members who care for aged demented relatives.

This study is based on a previous investigation into 46 caregivers' experience of burden and burnout when caring for a demented elderly relative. The aim of this study was to describe caregivers who develop or experience burnout (group A) and caregivers without experience of burnout (group B) and how they cope with major strain. The interviews focused on the caregivers' descriptions of their major strain (the demented person's memory difficulties and change in behaviour and the caregivers' experiences of their feelings of loss and their new role) and what they did, thought and felt in these situations. The interviews were coded and categorized and a chi-square test was performed. It was found that those in group A more often used an emotion-focused strategy (grieving, worrying and self-accusation). They were also the only ones using wishful thinking and stoicism as strategies. Those in group B used a problem-focused strategy more often (confronting the problem, seeking information and seeking social support). Another interesting finding was that the caregivers in group B frequently used the emotion-focused strategy of acceptance in combination with seeking information and seeking social support. To mix approaches like these seems to be an effective choice of strategy. It was also found that the caregivers' gender seems to have an effect on the coping strategy. The demented person's domicile did not, however, appear to result in any significant difference.

Burden and Stress on Relatives (Informal Carers) of Dementia Sufferers in Psychogeriatric Nursing Homes

The Zarit Burden Scale (ZBS), the 30‐item General Health Questionnaire (GHQ) and a General Knowledge Test of Dementia (GKT) were administered to the primary family carers (usually a spouse or daughter) of 51 patients with dementia who had been admitted to two psychogeriatric nursing homes for mobile disturbed dementia sufferers. Informal carers for these patients demonstrated significant levels of burden and psychological morbidity up to two years after their demented relatives' admission to the nursing home. Spouse carers and carers from non‐English speaking backgrounds demonstrated significantly more burden than other carers.

Slowing of wound healing by psychological stress

There is evidence that psychological stress adversely affects the immune system. We have investigated the effects of such stress, caused by caring for a relative with Alzheimer's disease, on wound healing. We studied 13 women caring for demented relatives (mean age 62·3 [SE 2·3] years) and 13 controls matched for age (60·4 [2·8] years) and family income. All subjects underwent a 3·5 mm punch biopsy wound. Healing was assessed by photography of the wound and the response to hydrogen peroxide (healing was defined as no foaming). Wound healing took significantly longer in caregivers than in controls (48·7 [2·9] vs 39·3 [3·0] days, p<0·05). Peripheral-blood leucocytes from caregivers produced significantly less interleukin-1β mRNA in response to lipopolysaccharide stimulation than did controls' cells. Stress-related defects in wound repair could have important clinical implications, for instance for recovery from surgery.