- Email: [email protected]
Do not go gentle into that good night……
e2 4
Abstracts / Alzheimer’s & Dementia 5 (2009) e1–e9 PREDICTORS OF BURDEN IN CAREGIVERS OF PEOPLE WITH DEMENTIA
Henry Brodaty1, Michael Woodward2, Karyn Boundy3, David Ames4 ON 1 BEHALF OF THE PRIME STUDY GROUP, Prince of Wales Hospital and Primary Dementia Collaborative Research Centre, University of New South Wales, Australia; 2Austin Health, Repatriation Hospital, VIC, Australia; 3The Queen Elizabeth Hospital, SA, Australia; 4St Georges Hospital, VIC, Australia Aims: To investigate what predicts of change in burden after 6-months in caregivers of people with dementia or mild cognitive impairment who are still living at home and are assessed in a memory clinic. Methods: 323 patients with a diagnosis of mild cognitive impairment or dementia enrolled in The PRIME (Prospective Research In MEmory clinics) study had complete data at baseline and 6 months and were included in this analysis. PRIME is a prospective, longitudinal, multiple cohort naturalistic non-prescriptive study of patients presenting to memory clinics at eight sites within Australia. Clinical, treatment, health status, caregiver and economic data were collected. Using multiple linear regression models, we examined correlations between a) Zarit Burden Inventory (ZBI) scores at month six adjusted for baseline ZBI score and b) change in ZBI over 6 months and age at onset of dementia, caregiver sex, caregiver employment status, living arrangements, service usage, psychotropic medication usage and the baseline results for Neuropsychiatric Index (NPI), Clinical Dementia Rating, Mini Mental State Examination, ZBI, Functional Autonomy Measurement System. No correction for multiplicity was performed. Results: Month six ZBI was significantly related to: female caregivers (Coeff¼ 3.95, p¼0.002), ZBI at baseline (Coeff¼ 0.70, p <0.001), service usage (Coeff¼ 2.74, p¼0.037), psychotropic medication usage at baseline (Coeff¼ 2.48, p¼0.045) employment status (Coeff¼ -4.17, p¼ 0.029), MMSE at baseline (Coeff¼ -0.34, p¼0.032) and living with spouse (Coeff¼ -4.16, p¼0.043). Change in ZBI was significantly associated with female caregivers (Coeff¼3.50, p¼0.002), change in NPI (Coeff¼0.19, p<0.0001), baseline ZBI (Coeff¼-0.29, p<0.0001), change in SMAF (Coeff¼-0.51, p<0.0001), patient living alone (Coeff¼-5.23, p¼0.028) and use of psychotropic medications (Coeff¼2.26, p¼0.038). Conclusions: At baseline, higher caregiver stress was associated with being a female caregiver, high baseline ZBI, service usage and the use of psychotropic medication. At 6 months, being employed, higher MMSE baseline total score and living arrangement were associated with lower caregiver stress. Over 6 months, increasing behavioural disturbance, decreasing functionality, female caregivers, higher baseline ZBI, living with the patient and psychotropic medication use were associated with increasing caregiver burden.
5
DO NOT GO GENTLE INTO THAT GOOD NIGHT..
B. Boman Background: With our focus on dementia, which is one of the most devastating illnesses to afflict people in later life, it is easy to forget that the majority of people in this age group are not cognitively impaired & indeed are capable of leading stimulating and creative lives. Methods: This paper will look at a range of people who have made significant creative contributions in later life, but will specifically focus on three great masterworks, all of which were created after the age of seventy, Sophocles’ ‘‘Electra,’’ Claudio Monteverdi’s ‘‘Coronation of Poppaea’’ and Giuseppe Verdi’s ‘‘Otello.’’ Results: All three works demonstrate that not only is extraordinary creativity possible in late life but that their authors cynically appreciated the fact that virtue seldom wins out over rectitude, that sex, revenge & political ambition are key drivers in human motivation and that history seldom learns from its mistakes. Conclusions: Forget Ekik Erikson’s vision of old age being a period of quiet contemplation & philosophical summing up of a life well lived, it’s a deeply cynical period where the realities of human nature, sex and violence are fully appreciated free of the idealism of youth.
6
THE FAMILY INVOLVEMENT IN CARE (FIC) STUDY: A SNAPSHOT OF PARTNERSHIP INTERVENTION OUTCOMES FOR FAMILY AND STAFF CAREGIVERS IN RESIDENTIAL DEMENTIA CARE
M. Bramble1, W. Moyle1, D. Shum1, M. McAllister2, 1Griffith University, Brisbane, QLD, Australia; 2University of the Sunshine Coast, QLD, Australia Background: The Family Involvement in Care (FIC) model has been developed and implemented in Northern America with successful family and staff caregiver outcomes. The aim of this partial replication pilot study was to implement and evaluate the family/staff partnership model and test its success in the Australian context. Methods: The four step education intervention protocol aimed to develop cooperative roles between family and residential staff caregivers based on negotiation of therapeutic activities for the resident with dementia. The sample for this controlled trial study consisted of 57 family and 58 staff caregivers of residents with moderate to severe dementia across a control and intervention site. Between group and within group effects were analysed using ANOVAS at <0.05 level of significance. Results: Pre test comparisons showed no significant group differences in stress or satisfaction measures for families and staff. Post test family measures indicated decreased satisfaction with management effectiveness [t(29) ¼ 2.64, p<.05] and with staff caregivers [t(55) ¼ 2.18, p<.05] compared to the control site. Post test staff measures showed increases in staff stress due to residents’ inappropriate behavior [t(30) ¼ -2.10, p<.05].and perceived lack of organizational resources available to care for the residents, compared to the control site [t(56) ¼ -3.71, p<.01]. Conclusions: Whilst there were some improvements in relationships between staff and families at the intervention site, the major barrier to the success of the partnership intervention in achieving beneficial long term effects was the lack of resources required to improve care and promote best practice outcomes. 7
THE PATHWAY TO DEMENTIA DIAGNOSIS A TIMELINE
C. Speechly1, C. Bridges-Webb1, E. Passmore1, 1RACGP NSW & ACT Faculty, North Sydney, NSW, Australia Background: Earlier diagnosis of dementia can have many benefits for the person with dementia and their family and/or carer. This study aimed to describe the timeline for milestones in the pathway to dementia diagnosis, as reported by carers. Methods: A cross-sectional, anonymous, retrospective survey was mailed or distributed to 415 adult carers or significant family members of people with dementia by Alzheimer’s Australia New South Wales, Sydney residential aged care facilities, and Sydney general practitioners. Two hundred and nine surveys were completed. Carers were asked for information about milestones in the journey to dementia diagnosis (first symptoms, first actions, consultations, diagnosis, resource use and institutionalization) and when these first occurred. Results: At the time of the survey, the people with dementia were, on average, 81.3 years old (Standard deviation 7.8 years), and 44% lived in a residential aged care facility. The first symptoms of dementia were noticed on average 1.9 years before the first health professional consultation about dementia and 3.1 years before a firm diagnosis of dementia. The person stopped driving on average 1.5 years after first symptoms were noticed. Other milestones included needing help with daily activities (2 years after first symptoms), first accessing dementia-related resources (2.8 years) and entering residential care (5.2 years). Conclusions: Seeing a doctor, accessing resources and obtaining a diagnosis of dementia can be a prolonged and difficult process. Further studies should determine how best to educate communities and health professionals to achieve earlier recognition of symptoms, earlier diagnosis, and appropriately timed resource use. 8
A PATHWAY TO MORE COHESIVE COMMUNITY BASED DEMENTIA CARE
L. Carlson1, J. Abbey2, E. Palk2, S. Wise2, 1Northside Primary and Community Health Services, Brisbane, QLD, Australia; 2Dementia Collaborative Research Centre, Queensland University of Technology, Brisbane, QLD, Australia
Abstracts / Alzheimer’s & Dementia 5 (2009) e1–e9 PREDICTORS OF BURDEN IN CAREGIVERS OF PEOPLE WITH DEMENTIA
Henry Brodaty1, Michael Woodward2, Karyn Boundy3, David Ames4 ON 1 BEHALF OF THE PRIME STUDY GROUP, Prince of Wales Hospital and Primary Dementia Collaborative Research Centre, University of New South Wales, Australia; 2Austin Health, Repatriation Hospital, VIC, Australia; 3The Queen Elizabeth Hospital, SA, Australia; 4St Georges Hospital, VIC, Australia Aims: To investigate what predicts of change in burden after 6-months in caregivers of people with dementia or mild cognitive impairment who are still living at home and are assessed in a memory clinic. Methods: 323 patients with a diagnosis of mild cognitive impairment or dementia enrolled in The PRIME (Prospective Research In MEmory clinics) study had complete data at baseline and 6 months and were included in this analysis. PRIME is a prospective, longitudinal, multiple cohort naturalistic non-prescriptive study of patients presenting to memory clinics at eight sites within Australia. Clinical, treatment, health status, caregiver and economic data were collected. Using multiple linear regression models, we examined correlations between a) Zarit Burden Inventory (ZBI) scores at month six adjusted for baseline ZBI score and b) change in ZBI over 6 months and age at onset of dementia, caregiver sex, caregiver employment status, living arrangements, service usage, psychotropic medication usage and the baseline results for Neuropsychiatric Index (NPI), Clinical Dementia Rating, Mini Mental State Examination, ZBI, Functional Autonomy Measurement System. No correction for multiplicity was performed. Results: Month six ZBI was significantly related to: female caregivers (Coeff¼ 3.95, p¼0.002), ZBI at baseline (Coeff¼ 0.70, p <0.001), service usage (Coeff¼ 2.74, p¼0.037), psychotropic medication usage at baseline (Coeff¼ 2.48, p¼0.045) employment status (Coeff¼ -4.17, p¼ 0.029), MMSE at baseline (Coeff¼ -0.34, p¼0.032) and living with spouse (Coeff¼ -4.16, p¼0.043). Change in ZBI was significantly associated with female caregivers (Coeff¼3.50, p¼0.002), change in NPI (Coeff¼0.19, p<0.0001), baseline ZBI (Coeff¼-0.29, p<0.0001), change in SMAF (Coeff¼-0.51, p<0.0001), patient living alone (Coeff¼-5.23, p¼0.028) and use of psychotropic medications (Coeff¼2.26, p¼0.038). Conclusions: At baseline, higher caregiver stress was associated with being a female caregiver, high baseline ZBI, service usage and the use of psychotropic medication. At 6 months, being employed, higher MMSE baseline total score and living arrangement were associated with lower caregiver stress. Over 6 months, increasing behavioural disturbance, decreasing functionality, female caregivers, higher baseline ZBI, living with the patient and psychotropic medication use were associated with increasing caregiver burden.
5
DO NOT GO GENTLE INTO THAT GOOD NIGHT..
B. Boman Background: With our focus on dementia, which is one of the most devastating illnesses to afflict people in later life, it is easy to forget that the majority of people in this age group are not cognitively impaired & indeed are capable of leading stimulating and creative lives. Methods: This paper will look at a range of people who have made significant creative contributions in later life, but will specifically focus on three great masterworks, all of which were created after the age of seventy, Sophocles’ ‘‘Electra,’’ Claudio Monteverdi’s ‘‘Coronation of Poppaea’’ and Giuseppe Verdi’s ‘‘Otello.’’ Results: All three works demonstrate that not only is extraordinary creativity possible in late life but that their authors cynically appreciated the fact that virtue seldom wins out over rectitude, that sex, revenge & political ambition are key drivers in human motivation and that history seldom learns from its mistakes. Conclusions: Forget Ekik Erikson’s vision of old age being a period of quiet contemplation & philosophical summing up of a life well lived, it’s a deeply cynical period where the realities of human nature, sex and violence are fully appreciated free of the idealism of youth.
6
THE FAMILY INVOLVEMENT IN CARE (FIC) STUDY: A SNAPSHOT OF PARTNERSHIP INTERVENTION OUTCOMES FOR FAMILY AND STAFF CAREGIVERS IN RESIDENTIAL DEMENTIA CARE
M. Bramble1, W. Moyle1, D. Shum1, M. McAllister2, 1Griffith University, Brisbane, QLD, Australia; 2University of the Sunshine Coast, QLD, Australia Background: The Family Involvement in Care (FIC) model has been developed and implemented in Northern America with successful family and staff caregiver outcomes. The aim of this partial replication pilot study was to implement and evaluate the family/staff partnership model and test its success in the Australian context. Methods: The four step education intervention protocol aimed to develop cooperative roles between family and residential staff caregivers based on negotiation of therapeutic activities for the resident with dementia. The sample for this controlled trial study consisted of 57 family and 58 staff caregivers of residents with moderate to severe dementia across a control and intervention site. Between group and within group effects were analysed using ANOVAS at <0.05 level of significance. Results: Pre test comparisons showed no significant group differences in stress or satisfaction measures for families and staff. Post test family measures indicated decreased satisfaction with management effectiveness [t(29) ¼ 2.64, p<.05] and with staff caregivers [t(55) ¼ 2.18, p<.05] compared to the control site. Post test staff measures showed increases in staff stress due to residents’ inappropriate behavior [t(30) ¼ -2.10, p<.05].and perceived lack of organizational resources available to care for the residents, compared to the control site [t(56) ¼ -3.71, p<.01]. Conclusions: Whilst there were some improvements in relationships between staff and families at the intervention site, the major barrier to the success of the partnership intervention in achieving beneficial long term effects was the lack of resources required to improve care and promote best practice outcomes. 7
THE PATHWAY TO DEMENTIA DIAGNOSIS A TIMELINE
C. Speechly1, C. Bridges-Webb1, E. Passmore1, 1RACGP NSW & ACT Faculty, North Sydney, NSW, Australia Background: Earlier diagnosis of dementia can have many benefits for the person with dementia and their family and/or carer. This study aimed to describe the timeline for milestones in the pathway to dementia diagnosis, as reported by carers. Methods: A cross-sectional, anonymous, retrospective survey was mailed or distributed to 415 adult carers or significant family members of people with dementia by Alzheimer’s Australia New South Wales, Sydney residential aged care facilities, and Sydney general practitioners. Two hundred and nine surveys were completed. Carers were asked for information about milestones in the journey to dementia diagnosis (first symptoms, first actions, consultations, diagnosis, resource use and institutionalization) and when these first occurred. Results: At the time of the survey, the people with dementia were, on average, 81.3 years old (Standard deviation 7.8 years), and 44% lived in a residential aged care facility. The first symptoms of dementia were noticed on average 1.9 years before the first health professional consultation about dementia and 3.1 years before a firm diagnosis of dementia. The person stopped driving on average 1.5 years after first symptoms were noticed. Other milestones included needing help with daily activities (2 years after first symptoms), first accessing dementia-related resources (2.8 years) and entering residential care (5.2 years). Conclusions: Seeing a doctor, accessing resources and obtaining a diagnosis of dementia can be a prolonged and difficult process. Further studies should determine how best to educate communities and health professionals to achieve earlier recognition of symptoms, earlier diagnosis, and appropriately timed resource use. 8
A PATHWAY TO MORE COHESIVE COMMUNITY BASED DEMENTIA CARE
L. Carlson1, J. Abbey2, E. Palk2, S. Wise2, 1Northside Primary and Community Health Services, Brisbane, QLD, Australia; 2Dementia Collaborative Research Centre, Queensland University of Technology, Brisbane, QLD, Australia