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P13. Caregiver burden and BPSD

Detailed Programme, abstracts and presentations

P13. Caregiver burden and BPSD (Saturday, 6 October, 8.30-10.00, Europa 1)

P13.1. Caregivers burden, BPSD symptoms and respite care

A.Bonora, M.Turci, G. Menabue, E. Boni, A. Fabbo, R. Chattat

The occurrence of behavioral and Psychological Synptoms (BPSD) during the course of the illness is related to a high level of burden in the caregiver and a high risk, for the person with dementia, to be moved to nursing home. Among approaches used to help caregivers, when BPSD are presents in particular behavioral symptoms, the respite care is arranged to relief caregivers from caring for a short period of time, usually one month. In this short study we evaluate the impact of respite care, aimed to the management of BPSD, for a long period (from 3 to 6 months) with main objective not only the relief but also the return of the person with dementia to his own home.

We assess 19 caregivers of person with dementia (4 male; mean age 80.9 yrs, 63% AD) with high score on NPI (total score 41) who are admitted to a special care unit in order to assess and develop a plan for BPSD management. The main duration of special unit stay is 90 days (± 3 months) and than the person with dementia is discharged to his own home (60%).

For the assessment of caregivers the Zarit Burden Interview and the General Health Questionnaire (12 item version) for the assessment of psychological well-being are administered at the admission to the special unit and at the discharge.

The results show a significant differences on caregivers burden ( ZBI scores : 40,12 to 29, 36; p<.001) and well being (GHQ scores: 17,70 to 13,90; p<.01). Demographic variables (age, years of disease, parental relationship) had not an influence on caregivers stress relief.

During special unit admission a management plan of the BPSD are developed (NPI score at the discharge 30) and caregivers are involved and supported during all the period until the discharge of patient from the unit care. In order to provide continuity of care both for patients and caregivers, were been agreed with the families integrated projects with the local services (counseling (7), day center care (3), family assistant (6), specialized health care (all)..).

We can conclude that the admission to a special care unit can be effective in reducing caregivers burden and distress and can be used when the presence of behavioral symptoms related to dementia are out of control for caregivers. The long admission period don’t impair the possibility for the person with dementia to be reintroduced to his own home .

P13.2. Are depressive symptoms in Mild Cognitive Impairment patients predictive for conversion to dementia?

Eva Dierckx, Sebastiaan Engelborghs, Stefan Van der Mussele, Rudi De Raedt, Peter Paul De Deyn and Ingrid Ponjaert-Kristoffersen

Background: Depressive symptoms are common in all types of dementias and at all disease stages, including in mild cognitive impairment (MCI). However, there is still disagreement whether these symptoms are predictive of conversion to dementia.

Purpose: In this study, we want to explore the predictive accuracy of the presence of depressive symptoms (it is the total score on the Geriatric depression scale (GDS)) for Alzheimer’s Disease (AD) in amnestic MCI (aMCI) patients, both at 1,5 years and 4 years of follow up. 

Methods: 40 aMCI patients from a memory clinic were tested at baseline with the GDS, the cognitive part of the Cambridge Examination for Mental Disorders of the Elderly (CAMCOG), the Mini Mental Status Examination (MMSE) and several other neuropsychological tests. After 18 months and after 4 years, MCI-patients were reassessed with the CAMCOG, MMSE and GDS and a follow up diagnosis was established. Of those who were seen for follow up after 1,5 years (n=31), 7 fulfilled (NINCDS-ADRDA) criteria of probable AD, while 24 did not convert. After 4 years 28 patients were seen for follow up; 17 received a diagnosis of AD, while 11 did not convert.

Results: Binary logistic regression analyses revealed that scores on the GDS at baseline were not able to predict conversion to AD in aMCI patients after 18 months of follow up (Wald X2(1) = 3.20, p = .074 (CI95%: 0.983-1.447), nor at the  4-year follow up (Wald X2(1) = 0.21,p = .647 (CI95%: 0.875-1.239).

Conclusions:In our study, the presence of depressive symptoms as measured with the 30-item GDS at baseline, was not associated with a conversion to dementia in aMCI patients.

P13.3. The effect of territorial offenses on agitation in patients of dementia.

Yu Shan Chien, Ming Chi Pai

Background: Territory refers to the defense area in space or belief. Violation of territory will result in defense behavior. The theory and practice are based on animal behavior, and territory is a unique form of human beings. This study is focus on dementia patients whose behavior and cognitive often negatived by caregiver due to characteristic of disease. Meanwhile, it is a sort of violation of territory for dementia patients. According to clinical observation, violation of territory is closely related to agitated behavior. Hence, the purpose of the research is to discuss the effect of territory offenses and agitated behavior in dementia patients.

Methods: There were normal control group and dementia group respectively. A cross-over design was adopted, including two tests. Film and questions were given in order to simulate the situation of violation of territory. Test 1-This test is to create cognitive conflict by watching video stream which the images doesn’t match the sound. Test 2 - Question and Answer is conducted in test 2 and the video would immediately display the answer is correct or not. Researcher will observe patients’ behaviors while the negative images and sounds generated. Heart rate variability (HRV) and center of pressure variability (COPV) were applied to evaluate agitated behavior. HRV monitor and Wii Balance Board were utilized to measure physical and behavior orientation of aggressive and non-aggressive behavior respectively.

Results: The dementia patients are prone to generate agitated behavior when their territory is violated. That is, to achieve equal results of index variance takes shorter time. Besides, the agitated behavior of dementia patients is happened much more often than normal people, which mean the index of variance is intensive per time unit. Also, the dementia patients are more aggressive than others which indicate lower variance of heart rate. Higher changes of COPV mean that non-aggressive behavior happened intensively.

Conclusion: According to Sigmund Freud’s personality construct theory, super-ego and ego are constrained by ethical standards. Communication and negotiation are methods used by super-ego and ego for achieving a balance while they faced violation of territory. As for the dementia patients, they behave directly without cover owing to the return of Id on personality development. Thus, they are relatively easy to agitate when encountering violation of territory. As a result, the dementia patient needs more respect in different area compare with normal people. And this can adopted to improve care in the further.

P13.4. Impact of caregiver burden and depression on rating discrepancy across domains in Mild cognitive Impairment and early-stage Alzheimer’s disease

Livia Pfeifer, Reinhard Drobetz, Sonja Fankhauser, Moyra E. Mortby, Andreas Maercker, Simon Forstmeier

Objectives: Research has demonstrated that caregiver of cognitively impaired patients may overreport patient’s suffering. The present study investigated to what extent caregiver burden and depression are associated with the rating discrepancy regarding the patient’s depression, apathy, daily functioning, and quality of life.

Participants: The sample consisted of 35 persons with Mild Cognitive Impairment and 39 with Alzheimer’s disease and their collateral caregivers.

Measurements: Raw discrepancy scores were calculated by subtracting the mean caregiver score from respective mean patient score of the following assessment instruments: Geriatric Depression Scale (GDS), Apathy Evaluation Scale (AES), Bayer-Activities of Daily Living scale (B-ADL), and Quality of Life-AD scale (QoL-AD). Caregivers completed in addition the Zarit Burden Interview (ZBI) and the Center for Epidemiologic Studies Depression scale (CES-D).

Results: Intraclass correlation coefficients (ICC) were low for apathy (.36), daily functioning (.38), and quality of life (.30) and moderate for depression (.51). All four domains showed negative rating discrepancies, which indicates that caregiver rating bias is present in depression, apathy, daily functioning, and quality of life. Regression analyses revealed that caregiver burden significantly contributed to explaining dyadic rating discrepancies in daily functioning and quality of life. Caregiver depression contributed to explaining dyadic rating discrepancies only for depression.

Conclusions: Data, which are based on caregiver ratings, have to be interpreted with caution when caregiver burden or depression is present, because these caregiver characteristics might lead to a substantial overreporting of patient’s suffering. Furthermore, it should be considered that there exist considerable differences between domains.

P13.5. The effects of behavioural variant frontotemporal dementia: developing supportive care strategies for both the sufferer and their carers

Dr Jacqueline Parkes, Hilda Hayo, Professor Judith Sixsmith

Context: Frontotemporal dementias (FTD) are a group of conditions that are relatively more common in the under 65 yr age group, and include 3 main clinical variants:-

  1. frontal or behavioural variant (bv-FTD) (also known as Pick’s Disease)
  2. semantic dementia
  3. progressive non fluent aphasia.

Behavioural and personality changes due to damage to the frontal lobe occur very early into the disease process and can be easily mistaken for other conditions such as: depression; stress; relationship breakdown and employment issues. As a consequence often people do not present for assessment and diagnosis until they have been symptomatic for 3-5 years and usually because other people e.g. family, friends or employers have insisted they attend the General Practitioner due to their gradually deteriorating behaviour and change of personality (Graham 2007). These changes may include:-

  • alterations in personality and social conduct
  • disinhibition
  • distractibility
  • reduced insight
  • appetite changes
  • ritualised and stereotypic behaviours
  • reduced empathy and apathy

As an experienced senior nurse practitioner in dementia care, the lead researcher2, had noted that the levels of distress expressed by the families appeared to be higher than that expressed by families of people living with other dementias, such as Alzheimer's Disease. Reasons for this may include the different presentation of FTD compared to other dementias; and the apparent lack of understanding, support and treatment for people living with its effects

Research Design:The overall aim of this research project, which will be conducted in three distinct phases, is to investigate the effects of bv-FTD on the person living with the diagnosis and their family and to identify therapeutic strategies and interventions which may provide effective support and improve the quality of life for both the sufferer and their carers. The three distinct phases of the overall research study are:-

Phase 1: An extensive case finding process for individuals with bv-FTD and carers across the region to identify prevalence and recruit participants into the main study [Phase 3]; and a review of current formal (Primary care, specialist services) and informal support networks for individuals suffering with bv-FTD and their carers

Phase 2: focus group interviews to provide in-depth study viewpoints on the day to day experiences of caring. This will be followed up with the opportunity to attend a 6 week training programme for carers of sufferers with bv-FTD.

Phase 3 Phenomenological qualitative study of the lived experience of the sufferer with bv-FTD and their carers. This will be undertaken as part of a professional doctoral programme undertaken by the second author.

During all phases of the overall study, the intention is to gather information about what techniques, approaches and interventions the person living with bv-FTD and their family find most helpful to try to identify which interventions could be utilised to enable them to cope with the symptoms of bv-FTD.

Aim of oral presentation: This oral presentation will present the initial pilot work of phases 1 and 2 of the overall project, which is currently being undertaken by the Dementia Research Team in the Centre for Health and Well-being Research [CHWR] at the University of Northampton, UK as part of their Dementia Research Group 2012-13 Strategy.



Last Updated: Thursday 15 November 2012