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P7. Behavioural and psychological symptoms in dementia

Detailed Programme, abstracts and presentations

P7.1. The management of BPSD in an Alzheimer’s special care unit

Andrea Fabbo, Lucia Bergamini, Annalisa Bonora, Marina Turci, Rabih Chattat

Background: The natural course of dementia is associated with the presence of behavioural and psychological symptoms (BPSD), that are the major cause of burden both for the patient and for the family caregiver. Although home care may be the preferred choice for many families, staying at home may not be a realistic option for many persons with dementia, especially in the late stages of the disease or in the presence of BPSD. Though there are no RCT’s comparing Alzheimer Special Care Units (SCUs) to traditional nursing homes (NHs), many observational studies reported the benefit of a caring program that includes the staff training, special planning, an adapted physical environment, and caregivers involvement. Our SCUs, founded in 2001 in the setting of a traditional NH, has peculiar characteristics, such as the adoption of a person centred approach and organisational program, use of comprehensive geriatric assessment tailored on residents with dementia and BPSD, training for formal careers oriented to learn specific stimulation techniques (occupational activity, ROT) and to prevent burn-out.

Methods: Admission criteria to SCUs are: BPSD difficult to manage at home despite the use of multiple pharmacological or non pharmacological attempts (presence of BPSD of clinical relevance; NPI, Neuropsychiatry Inventory > 28/144, or NPI single item=12, except for depression and apathy), Burden and significative distress of family caregiver as a consequence of the care of person with dementia (evaluated with RSS 16-30, Relative Stress Scale),), moderate to severe cognitive impairment (MMSE <20, Mini Mental State Exhamination), independent walk (Tinetti scale >18/28). Length of stay in the SCU range from 3 to 6 months, during this period the activity of the staff, (medical, nursing, formal careers, psychologists) is oriented to support residual skills, management of BPSD using psychosocial interventions as “Snoezelen” , “occupational therapy” and reminiscence therapy ) aimed to reduce psychotropic medications and physical restraints, sustain familiars and planning with them and social services the return at home after discharge.

Results: From October 2008 to March 2011, 41 persons (71%W, 29%M, mean age 80.9±5.9) affected by Alzheimer disease (CDR 3-4), with severe BPSD were consequently admitted in the SCUs located in “CISA Nursing Home”. Median length stay was 115,1±68,3 days. Comparisons from admission to discharge showed an unvaried cognitive and functional profile, in view of a significant decreasing in BPSD (NPI at admission 44.4±15,5, NPI at discharge 30.8±11.9, t=4.34, p<0.001). The improvement of the behavioural symptoms is not explained by a significant increasing in psychotropic medications (number of drugs at admission 5.2±3.1, number of drugs at discharge 5.3±2.4 t=0.13, p=n.s.). We also observed a decrease in use of benzodiazepines and typical antipsychotic drugs, although there’s no statistical significant difference. At discharge 68 % of patient returned at home, at follow-up 62% still at home after 6 month and 47% after one year.

Conclusion: Though there are conflicing data about the efficacy of SCUs toward traditional NHs in the management of BPSD, our experience, suggests that specifics person centred programs in a adapted environment, together with caregivers involvement, seems to be a useful and effective model of care for persons with dementia and severe BPSD. Further studies are needed, in particular RCT, to confirm the results.

P7.2. Apathy and motivation regulation of cognitively impaired older people and burden of the caregiver

Simon Forstmeier, Moyra Mortby, Livia Pfeifer, Andreas Maercker

Psychopathological symptoms occur already in mild cognitive impairment (MCI) and early Alzheimer’s disease (AD). Apathy belongs to the most frequent symptoms and is associated with a faster cognitive decline and a reduced quality of life in the patient, a larger burden in the caregiver, and higher costs of care. The aim if this study is to investigate (1) which variables predict apathy and (2) which role apathy plays in the prediction of caregiver’s burden. Since apathy is a motivational dysfunction, it is hypothesized that motivation regulation of the patient predicts apathy and mediates the assumed association of apathy with caregiver’s burden.

In a sample of 60 individuals with MCI or early AD, the Apathy Evaluation Scale, the Geriatric Depression Scale, the Bayer Activities of Daily Living (ADL), the Mini Mental Status Examination (MMSE), the motivation regulation subscale of the Volitional Components Questionnaire (VCQ), and the Social Support Questionnaire were applied. Caregiver’s burden was assessed using the Zarit Burden Inventory.

More symptoms of apathy were associated with lower motivation regulation, higher depression, more ADL impairment, and less social support. In a regression analysis, only motivation regulation and social support remained independent predictors of apathy. In a further regression analysis, caregiver’s burden was predicted by apathy as well as cognitive status of the patient, but not by depression and ADL. In addition, a mediator analysis showed that motivation regulation of the patient mediates the association of apathy with caregiver’s burden.

Motivation regulation is an important predictor of apathy in individuals with cognitive impairment and mediates the influence of apathy on caregiver’s burden. A limitation of the study is its cross-sectional design. The present sample will be assessed yearly for the next years, so longitudinal results will be available in the future with regard to these research questions.

A training of motivational abilities should be included in prevention and early intervention in order to reduce both apathy symptoms in patients and burden in caregivers. Enhancing motivation regulation might be a mechanism underlying the efficacy of engagement in pleasant/structured activities often used in psychosocial interventions.

P.7.3. Recognising, coping and working with behavioural and psychological symptoms of dementia along with relatives in Alzheimer´s disease and other dementias

Ida Atladottir

Behavioural and psychological symptoms of Dementia (BPSD) are highly prevalent among persons with dementia both living in the community and in institutional settings. In Iceland, as in Scandinavia, it is expected that two-thirds of people with dementia live in their own homes and are cared for by close family members with some additional formal help. Variables like higher frequency of disturbing behaviour and caring for community-dwelling patients as well as low informal support have all been related to an increased burden of care. Such increased burden of care may in turn lead to more depressive symptomatology among carers.

All clients on the waiting list in the Day Care Center, Rodasalir have been diagnosed with dementia as a primary diagnosis in the Memory Clinic. Most clients have been up to six months on the waiting list before entering Rodasalir. The condition of the client often worsens and caregiver burden rises while waiting. The family caregivers or relatives are invited to have an interview with a psychiatric nurse who is also a MS in geriatric nursing and the director of the Day Care Centre. A few assessment scales are applied in this interview to recognise symptoms of dementia and the impact of the disease on the health and wellbeing of the client and the respective family. This is done for the purpose of reducing caregiver burden and to get clinical information. The following scales are used and self rated by the family under the guidance of the nurse: The Lawton and Brody´s Physical Self-Maintenance Scale (PSMS). Lawton Instrumental of Daily Living Scale (IADL), The Present Functioning Questionnaires (PFQ), The Neuropsychiatric Inventory with Caregiver Distress (NPI-D or NPI-NH, a nursing home version). Also Safety Assessment Scale (SAS) for people with dementia living at home is used for those who live alone. Sometimes The Screen for Caregiver Burden (SCB) and Geriatric Depression Scale (GDS) are applied when the caregiver (often the spouse) is exhausted or seems to be depressed.

It has been proposed that using formal instruments is of invaluable importance regarding education and better knowledge for caregivers about BPSD. It is assumed that going through the scales will support discussions among family members and guide them in their caregiver’s role. It gives the family opportunity to learn about the complex phenomena of BPSD and a way in which to express them within the family and to others. By these means the family is aware of the present condition and is prepared for what may be ahead and may also enjoy further support by telephone conversations or another interview lead by same registered nurse in Rodasalir. This support is supposed to relief distress and depression of caregivers. The behavioral and psychological symptoms of Dementia (BPSD) will change as time go by. Some symptoms might be more frequent, more severe and more distressing or they may disappear any day while another symptom can very well appear. These scales, especially, the NPI scale are used continuously during the client’s stay in Rodasalir to assess his or her present condition, to evaluate care requirements, medication use and decision regarding nursing home placement. Actually the family is supplied with photocopies of the scales in which assessment has been recorded. So these scales can be helpful when nursing home application is relevant and often justify the process.

P7.4. Are the BPSD the main motivation factor for examination in developing countries?

Roza Krsteska

Objective: In many developing countries studies for dementia are missing. The specialists are meeting patients in moderate and severe stages of dementia. The aim of this study was to analyse the situation in our country. Epidemiological studies don’t exist and the registrated cases are in lower numbers than the real situation. We have analyzed the motivation for examination of the patients with dementia, the Behavioural and Psychological Symptoms of dementia (BPSD) and the attitudes towards dementia.

Methods: The study included 60 patients diagnosed with Alzheimer's or vascular dementia (by ICD 10; MMSE; HIS; CT). The following instruments were used: Standardized clinical interview, the Behavioral Pathology in Alzheimer's disease Rating Scale (BEHAVE-AD), the Cohen-Mansfield Agitation Inventory (CMAI), and None standardized sociological-demographic questionnaire.

Results: 80% of the patients who came on examination were in moderate and severe stage of dementia. The average time from the beginning of the disease was 3.5 (+1.8) years. The BPSD were present in all patients with average time of 17 (+15) months. Paranoid and Delusional Ideation were more common in patients with Alzheimer's disease, than in the group with vascular dementia. The patients with vascular dementia have higher rate of depression and anxiety. The activity disturbances and aggressiveness were increased by disease progression. Their symptoms were not treated previously in all patients. The motivation for examination or hospitalization was exactly BPSD, not the cognitive symptomatology of dementia. In accordance with data from the epidemiologic studies the frequency of the BPSD is lower than in clinical samples because care is sought when neuropsychiatric symptoms emerge, but in our examination more than it, when they exceed the tolerance of the family. The patient’s family took care in 86.7 % and the presence of the BPSD was complicated highly the state of patient and his family. The family was not informed enough about the nature of the disease, its manifestation and possibility for the treatment. Also the physicians of the primary care who are the first in contact with patients were not informed enough and did not send the same on examination to the psychiatrists because the BPSD.

Conclusion: The patients who were on examination were in high percentage in the advanced stages. The BPSD were present in all patients and were not treated previously in all patients. The motivation for examination was BPSD and the examination was happened when the tolerance of the family was exceeded. According to the results and family data the family had on the main burden of dementia. The tradition that children care about elderly, accepted problems with memory associated with age had influence on later taking patients on examination. The family and the physicians of the primary care were not informed enough about the nature of the disease and possibilities for treatment. Epidemiological studies for dementia are needed. Education of healthcare providers for dementia and BPSD is needed as well as change of the attitude towards treatment of dementia in general.

P7.5. Care at home versus institutional care

Caroline Crawford

This presentation draws on my experience of caring for my husband, at home, in hospital and in a care home following his diagnosis of frontal temporal lobe dementia four years ago. It focuses on the importance of supporting the continuity of family relationships in the transition from home to institutional care; and the ongoing contribution to the quality of life of the person with dementia that the carer can uniquely make. The onset of this form of dementia is more rapid than Alzheimer’s and the psychological and behavioural symptoms are more acute, making coping with caring more difficult for family members and professional carers. This presentation looks at the particularly stressful impact of the illness on spouses/partners and positive responses to the emotional trauma’s experienced when faced with such a devastating change in the person they love. It aims to share practical lessons such as the importance of everyone involved having a common understanding of the nature of the condition, how best to support the person experiencing this frightening illness, and the need for the carer to accept help from professionals, relatives or friends.

It will also address the difficult decisions to be made when the behaviour of someone with this type of dementia becomes too challenging and explores feelings of guilt which the concept of “care at home v institutional care”, induces. It will illustrate best practice in relationship-centred care which recognises that the resident and his or spouse should not be subject to ‘institutional divorce’ but that they can still be involved in the person’s day-to-day routine. The contribution of spouses, other family members and friends should be built into the person’s care plan – this will help to eradicate the concept of ‘interfering relatives’ and help to normalise life in the care environment. This presentation aims to promote a better understanding about the benefits of this joint approach to care in institutional settings.



Last Updated: Wednesday 26 October 2011


  • Acknowledgements

    Alzheimer Europe gratefully acknowledges the support of the following sponsors: Fondation Médéric Alzheimer, Fondation Roi Baudouin, Janssen, Lilly, Pfizer, Sanofi and SCA Global Hygiene
  • Fondation Médéric Alzheimer
  • King Baudouin Foundation
  • SCA Global Hygiene