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Parallel Session: Carers of people with dementia

Abstracts and presentations

Increasing patient dependence on others is associated with increased caregiver subjective burden

Loretto Lacey, Elan Pharma International, Ireland,
Co-authors: T. McLaughlin, Chris Leibman, L. Mucha

Purpose: To evaluate the relationship between patient dependence on others (Dependence Scale, DS) and caregiver subjective burden and health status/utility in nonprofessional carers of patients with dementia.

Methods: The Adelphi Dementia Specific Programme collected data from non-professional carers in five European countries of patients 50+ years of age with probable Alzheimers disease (AD). Relationship between the DS summated score (range 0-15) and caregiver subjective burden (Zarit) and carer health status/utility s core (EQ-5D) were examined using univariate and multivariate regression techniqueS

Results: Data from 530 carers of patients with probable AD were included in the analysiS DS sum for patients was significantly correlated with carer Zarit scores (Pearson correlation 0.31, p<0.0001). The correlation between the DS sum and carer EQ-5D based utility score was weaker, but significant (-0.24, p<0.0001). Increased dependence on others was associated with increased Zarit score and reduced EQ-5D based utility score, after adjusting for patient and carer age, patient gender, patient stage of cognitive impairment and number of ADL limitations and behavioral problems and country. Other significant factors in the two multivariate regression models included carer age (p=0.001), and number of behavioral problems (p<0.01)

Conclusion: A measure of patient care needs, the DS was significantly associated with caregiver burden and health statuS These findings support the recognized link between exposure to stressors and caregiver burden. The weaker correlation between DS and health status suggests that factors other than caregiver burden can influence caregiver health status (including carer age and patient behavioral problems).

Informal caregivers of patients with dementia: experienced problems and needs for professional help

Sandra van Beek, NIVEL, Netherlands,
Co-authors: Julie Meerveld, J.M. Peeters and A.L. Francke

Introduction: The increasing prevalence of dementia and its impact on patients and relatives are important problems worldwide. Relatives often play an important role in the care for dementia patients, especially when the patient is living at home. To see how integrated dementia care might be improved, we investigated the problems of informal caregivers in the Netherlands and their needs for professional support.

Methods: We developed and validated a questionnaire to measure experiences and support needs of informal caregivers. This so called LDP- questionnaire is suitable for informal caregivers of dementia patients who live at home, in nursing homes or homes for the elderly and addresses all aspects of care from the onset of dementia till admission to a long-term care facility. From April 2006- January 2007, the LDP- questionnaire was completed by 984 informal caregivers in the Netherlands.

Results: The vast majority of informal caregivers (94%) experienced problems in the care for their relative with dementia; one-fifth could be described as highly burdened. Dealing with changes in behaviour (77%) and the lack of emotional support (54%) were most often named as important problems. Although almost all caregivers (93%) received some form of professional support, two thirds indicated that they had one or more specific needs for additional professional helP

Conclusion: Despite the wide array of services available to support informal caregivers in the Netherlands, informal caregivers of dementia patients are often highly burdened and need more professional help. Future support programmes for integrated dementia care should address these needs. The Dutch Alzheimer association will use these results for advocacy in the Netherlands

Social support of cohabitants having partners suffering from dementia or chronic pulmonary disease

Bente Nordtug, NTNU, Norway,
Co-authors: Are Holen, Olav Sletvold, Rolf Walstad, Steinar Krokstad

Objective To compare perceived and received social support of cohabitants living in their homes with partners suffering from either dementia or chronic pulmonary disease (COPD).

Methods This cross-sectional survey examined three concepts of social support and the characteristics of cohabitants living at home with partners having dementia or COPD. The sample included 101 cohabitants from the dementia group, and 105 cohabitants from the COPD group, 206 participants in all. The cohabitants were recruited through hospitals, rehabilitation centres and community care centres in Norway during 2006. Data from the cohabitants were collected by standardized questionnaires: The Relative Stress Scale (RRS) indicated their levels of burden of caring, and the Medical Outcomes Study Social Support Survey Form (SSS) captured dimensions of general social support. The severity of the patients´ disease was assessed by experts in the field using Clinical Dementia Rating (CDR), and the Global Initiative for Chronic Obstructive Lung Disease (GOLD). The overall response rate was 80 %.

Results About 60 % of the caregivers were women. Those of the dementia group were about seven years older, had longer cohabitation spans in years, yet the duration of the partners’ illness was shorter. Ill partners from the dementia group, manifested more aggressiveness, had lower degrees of self-care, and might be left alone for shorter time intervals, when compared to the COPD group.

Furthermore, the dementia group received more and diverse professional aids than those in the COPD group, especially as the diseases declined. Both groups experienced family and friends to withdraw socially. This was most pronounced in the dementia-group. In addition, the dementia group had fewer persons from family and friends supporting them. Perceived tangible support and perceived affectionate support was lower in the dementia group.

Conclusion The dementia group received more social support, but perceived less social support compared with those in the COPD group.

Differences between family care-givers of dependent old people with dementia and old people without cognitive impairment in six European countries

Christopher Kofahl, University Medical Centre Hamburg-Eppendorf, Germany,
Co-authors: Eva Mnich, Susanne Kohler

Objective: The EU funded project EUROFAMCARE (2003-2005) has analysed the situation of 5,923 family care-givers (FC) in six European countries (DE, EL, IT, PL, SE, UK). The presentation will contrast the situation of 1,144 family care-givers of dependent persons 65+ with a dementia diagnosis against the situation of 3,052 care-givers of dependent persons without any cognitive impairment. Persons with undiagnosed memory problems were excluded as well as residents of care homes. We wanted to know: a) To what extend and in which way are FCs of old people with dementia burdened compared to those without cognitive problems? b) Are there differences between the countries concerning the family care situation?

Methods: 5,923 family care-givers were interviewed on the basis of a common multidimensional assessment questionnaire. Data analysis was carried out with bi- and multivariate procedures and tests.

Results: In nearly all relevant categories for the assessment of the family care situation FCs of old people with dementia had moderately worse scores than the group without dementia. In a multivariate regression analysis focussing on perceived burden as the dependent variable we found social support having the strongest effect on FCs’ perceived burden, closely followed by behavioural problems of the elder, (I)ADL limitations, caring hours, FCs’ health and coping. FCs’ and elders’ age did not show any effect, neither the use of formal serviceS Comparing the countries we found a very strong negative impact in EL and a moderate impact in SE on perceived burden, whereas there were no differences between the other countrieS In SE the FCs are significantly older, while the Greek FCs have most of all to combine care and work, most working hours, most work restrictions, most reported unmet needs, the biggest demand on more support, and finally the lowest degree of formal service use.

Conclusion: In all countries the family care patterns show similar trends with respect for differences between FCs of dementia patients and cognitively unimpaired elders, but concerning the impact on perceived burden there is a significant difference between the countries, especially regarding the support of FCs and the carer-cared-for-relationship distinguished by the degree of kinship.

Alzheimer patients’ Caregivers Survey in Greece

Paraskevi Sakka, Athens Alzheimer’s Association, Greece,
Co-authors: E. Margioti, V. Vagenas, M. Tsolaki

Objective: In July 2008, Alzheimer’s Associations in Athens and Thessaloniki conducted a survey among caregivers of patients with Alzheimer’s disease (AD) which was sponsored by a pharmaceutical company. Aims were to record caregiver’s stance towards caring and their opinion on current status of AD treatment in Greece.

Methods: Interviews with caregivers were performed by clinical psychologists. A 4 or 5-point Likert-like scale was used to record opinions impossible to express with a ‘yes’ or ‘no’ answer.

Results: 200 caregivers participated. Sociologically: they were mainly women, over 45 years old, of middle/upper level of education, living in the same house with the patient and having a first-degree relationship to him/her. The vast majority of caregivers (85%) reported that nursing an AD patient has escalating negative psychological implications as the disease progresses. Main reported feelings were in order of frequency: sorrow, frustration and anger. Nevertheless, more than 80% of caregivers did not wish admittance into nursing homes. Cared-for patients received on average four medications per day which was characterized as at least ‘somehow inconvenient’ by 63% of the caregivers. Caregivers of patients with severe disease reported more difficulties ensuring medication compliance and patient adherence to dosage schedule, mainly due to patients’ refusal to cooperate.

Conclusion: As expected negative feelings are strongly related to caring for a person with dementia more so as the disease progresses. There is an urgent need to recognize the significant emotional burden of caregivers and support the development of respite services in Greece. Medication wise, simpler dosing schedules lighten considerably caregiver’s burden.

“Work&care” To arrange employment and care of dementia patients - The privatisation of a social problem

Andrea Radvanszky, Kalaidos University of Applied Sciences, Switzerland,
Co-author: Iren Bischofberger

The situation of working caregivers of persons in need in general and especially of dementia patients is extensively unconsidered in Switzerland. The care of people with dementia becomes an important issue due to rising rate of prevalence, increasing employment of women and the cost of public health care of chronically ill people. However, the socio-political priority and the desire of sick individuals and their relatives for care at home have drastic consequences for caregivers.

The Swiss National Science Foundation research project “work & care” addresses this topic. In the ongoing research project 15 expert interviews with representatives of government, business and health services, a business case study and 30 guideline-based partly narrative interviews with employed and no more employed people looking after Alzheimer patients were undertaken. The conspicuous behaviour and the personality changes of Alzheimer patients have a big impact on the temporal care expenditure, as well as on the psychological and emotional strain of family members. The conflict between family care and employment is multidimensional. Whether the caregiver maintains or reduces her work load or gives up the job has not only to do with the objective time factor (care requirements, organisation and co-ordination of external care) and financial considerations. Value and role conflicts, moral conflicts and loyalty conflicts play a decisive role as well.

Compared to other European countries, Switzerland lacks appropriate data which is evident in the absence of solutions in national family policy and business human resource management. Unlike child care there is no exceptional position of caregivers of older people or dementia patients given, neither socially evaluated nor financially and temporally supported by the employment law. More likely they have to face stigmatization and discrimination at work. Fear, guilt and shame conflicts should not be underestimated either, because they can lead to self-stigmatization of family members. This could be a possible explanation for the fact that already existing support programs are not used to extent expected. To capture the situation of working caregivers of dementia patients more adequately, e.g. changing forms of care arrangements and forms of social and psychological isolation, qualitative long-term research data (repeated narrative interviews with the same interviewees) would be necessary. From an economical and social political point of view the chances and boundaries of services and support as well as care policies must be discussed.



Last Updated: Wednesday 21 October 2009