- Email: [email protected]
O2-07-04: A cross-cultural qualitative study of barriers and facilitators to good quality care for people with dementia
Oral O2-07: Social and Behavioral Research 1 with existing knowledge. It is hard for people with memory impairments to establish links to prior knowledge at encoding, but if strategies are provided which perform this linking function, or if the stimuli themselves drive appropriate processing, then adequate learning can be achieved (Grinstead and Rusted 2001; Thoene and Glisky 1995). The evidence suggests, therefore, that if appropriate help with learning designed to ensure adequate encoding can assist with getting event-and-knowledgebased information into the memory store, there is a reasonable likelihood of retention. Methods: Development of a person centered research based cognitive training intervention program was undertaken. The program was designed to be used by formal and informal caregivers in primarily residential settings with family members diagnosed with early to moderately severe AD. (MMSE 16-26) The program consists of a structured series of cognitive and sensory stimulation exercises and activities based on a cognitive stimulation paradigm. Participants are “coached” through the program exercises by a family member, close friend, or other primary caregiver two times weekly, one hour per session. The program is a non-pharmacologic intervention that compliments current therapies for Alzheimer’s disease and does not interfere with medical management or require modification of the current standard treatment regimen. Results: Results of a review which followed 50 patients on the program for a 12 month period found clinically significant improvement in MMSE scores using the program intervention in residential settings utilizing formal and informal caregivers to facilitate program participation. While the data lacks a control placebo group, most AD patients are expected to decline by 2-3 MMSE points over a one year period (Dorauswany,2001). Conclusions: Preliminary clinical data indicates a robust effect on MMSE scores using this intervention. Comparative data analysis of participants strongly suggests that repeated practice appears to produce positive improvements in MMSE scores of 2-3 points over 12 months. O2-07-04
A CROSS-CULTURAL QUALITATIVE STUDY OF BARRIERS AND FACILITATORS TO GOOD QUALITY CARE FOR PEOPLE WITH DEMENTIA
Sube Banerjee, The Institute of Psychiatry, King’s College London, London, United Kingdom. Contact e-mail: [email protected] Background: Family carers are the most important source of dementia care, especially among ethnic minority populations, who are less likely to access health or social services. The evidence base on the experiences of people with dementia and family caregivers in these communities is profoundly limited. To explore the experience of people with dementia and caregiving attitudes, experiences and needs of informal carers of people with dementia from the three largest ethnic groups in the UK we completed a qualitative study. Methods: A qualitative study, using a grounded theory approach was completed. In-depth individual interviews were conducted with 31 carers of people with dementia (10 black Caribbean, 10 south Asian, 11 white British). Similar numbers of people with dementia and people without dementia from the three groups were also recruited. Interviews were tape-recorded, transcribed and transcribed using best quality qualitative methodology. Results: The attitudes and beliefs of people with dementia differed by ethnicity. Carers were identified as holding a “traditional” or “non-traditional” caregiver ideology, according to whether they conceptualised caregiving as natural, expected and virtuous. This informed feelings of fulfillment, strain, carers’ fears and attitudes towards formal services. The majority of south Asian, half the black Caribbean and a minority of white British participants were found to possess a traditional ideology. These caregiver beliefs interacted with those of the people with dementia to generate barriers to help-seeking and help-accepting, but also avenues for positive engagement. Conclusions: The findings suggest that specific cultural attitudes towards dementia in those affected and in the caregiving role have important implications for how people with dementia and their carers can best be supported.
O2-07-05
T147
PATIENT DEPENDENCE, FUNCTION, AND CHANGES IN COST OF CARE IN ALZHEIMER’S DISEASE
Carolyn Zhu1, Christopher Leibman2, Trent McLaughlin2, Nikolaos Scarmeas3, Marilyn Albert4, Jason Brandt4, Deborah Blacker5, Mary Sano1, Yaakov Stern3, 1James J. Peters VAMC, Bronx, NY, USA; 2 Elan Pharmaceuticals, South San Francisco, CA, USA; 3Columbia University, New York, NY, USA; 4Johns Hopkins University, Baltimore, MD, USA; 5Harvard Medical School, Boston, MA, USA. Contact e-mail: [email protected] Background: Patient dependence on others for care and services due to Alzheimer’s disease (AD) is a potentially useful measure of disease progression. However, there is limited information on the relationship between dependence and health care cost. The objectives of this study were to examine the relationship between patients’ dependence on cost of care at baseline and longitudinally. Methods: Data were obtained from 179 patients in the Predictors Study, a large, multi-center cohort of patients with probable AD followed from early stages of the disease (modified MiniMental State Examination, mMMSⱖ30 at baseline), representing 434 observations over time. Generalized linear mixed models were used to estimate, after controlling for age, gender, and number of comorbidities, the effects of patients’ dependence on others (Dependence Scale, DS) and functional impairment (Blessed Dementia Rating Scale, BDRS), on direct medical, direct non-medical and informal care costs. Models were estimated separately for baseline and longitudinal data. Results: At baseline, DS was significantly associated with informal cost (marginal effect ⫽ $1,690) while BDRS was significantly associated with direct medical cost (marginal effect ⫽ $1,406). Longitudinal analyses demonstrated that a one-point increase in DS was associated with a 5.7%, 10.5%, and 4.1% increase in direct medical care cost, direct non-medical care cost, and informal care cost, respectively. A one-point increase in BDRS was associated with a 7.6%, 3.9%, and 8.7% increase in direct medical care cost, direct non-medical care cost, and informal care cost, respectively. Conclusions: Both patient dependence and functional impairment are significantly associated with higher cost of care but relate to component costs differently. Small changes in both dependence and function were related to large changes in healthcare costs. Patient dependence and functional impairment are both important contributors to increasing costs in AD and should be considered in economics and outcomes research. O2-07-06
HOW FAMILIES WORK TO MAINTAIN CONVERSATIONAL COHERENCE DURING INTERACTIVE DINNER TIME TALK
Jeanne Katzman, UCLA, Los Angeles, CA, USA. Contact e-mail: [email protected] Background: An Alzheimer’s individual experiences increasingly impaired pragmatic skills. His or her ability to design utterances that are a contextually appropriate is compromised by impaired semantic language and, specifically pertinent to this paper, cognitive impairment and shortterm memory loss. Short term memory loss affects the ability recall informative utterances and occasions repeated questions or statements. As participation becomes more difficult, family members assume increasing responsibility to structure and organize the conversational interaction. “Speaking for the Alzheimer’s individual” is a common practice of healthy speakers working to normalize interaction. Methods: Thirty families in which one member had recent onset of Alzheimer’s Disease participated during a three year study. Each family had two videotaped dinner conversations which were later transcribed by Discourse Analysis. Both verbal and gestural communication was analyzed. Results: Responses of healthy family members to utterances of the Alzheimer’s individual were found to follow certain predictable patterns. Interactional sequences in which problematic utterances occurred such as word searches, ambiguous or contested utterances, or requests for information were identified and organized. There were three types of problematic utterances to which responses was not
A CROSS-CULTURAL QUALITATIVE STUDY OF BARRIERS AND FACILITATORS TO GOOD QUALITY CARE FOR PEOPLE WITH DEMENTIA
Sube Banerjee, The Institute of Psychiatry, King’s College London, London, United Kingdom. Contact e-mail: [email protected] Background: Family carers are the most important source of dementia care, especially among ethnic minority populations, who are less likely to access health or social services. The evidence base on the experiences of people with dementia and family caregivers in these communities is profoundly limited. To explore the experience of people with dementia and caregiving attitudes, experiences and needs of informal carers of people with dementia from the three largest ethnic groups in the UK we completed a qualitative study. Methods: A qualitative study, using a grounded theory approach was completed. In-depth individual interviews were conducted with 31 carers of people with dementia (10 black Caribbean, 10 south Asian, 11 white British). Similar numbers of people with dementia and people without dementia from the three groups were also recruited. Interviews were tape-recorded, transcribed and transcribed using best quality qualitative methodology. Results: The attitudes and beliefs of people with dementia differed by ethnicity. Carers were identified as holding a “traditional” or “non-traditional” caregiver ideology, according to whether they conceptualised caregiving as natural, expected and virtuous. This informed feelings of fulfillment, strain, carers’ fears and attitudes towards formal services. The majority of south Asian, half the black Caribbean and a minority of white British participants were found to possess a traditional ideology. These caregiver beliefs interacted with those of the people with dementia to generate barriers to help-seeking and help-accepting, but also avenues for positive engagement. Conclusions: The findings suggest that specific cultural attitudes towards dementia in those affected and in the caregiving role have important implications for how people with dementia and their carers can best be supported.
O2-07-05
T147
PATIENT DEPENDENCE, FUNCTION, AND CHANGES IN COST OF CARE IN ALZHEIMER’S DISEASE
Carolyn Zhu1, Christopher Leibman2, Trent McLaughlin2, Nikolaos Scarmeas3, Marilyn Albert4, Jason Brandt4, Deborah Blacker5, Mary Sano1, Yaakov Stern3, 1James J. Peters VAMC, Bronx, NY, USA; 2 Elan Pharmaceuticals, South San Francisco, CA, USA; 3Columbia University, New York, NY, USA; 4Johns Hopkins University, Baltimore, MD, USA; 5Harvard Medical School, Boston, MA, USA. Contact e-mail: [email protected] Background: Patient dependence on others for care and services due to Alzheimer’s disease (AD) is a potentially useful measure of disease progression. However, there is limited information on the relationship between dependence and health care cost. The objectives of this study were to examine the relationship between patients’ dependence on cost of care at baseline and longitudinally. Methods: Data were obtained from 179 patients in the Predictors Study, a large, multi-center cohort of patients with probable AD followed from early stages of the disease (modified MiniMental State Examination, mMMSⱖ30 at baseline), representing 434 observations over time. Generalized linear mixed models were used to estimate, after controlling for age, gender, and number of comorbidities, the effects of patients’ dependence on others (Dependence Scale, DS) and functional impairment (Blessed Dementia Rating Scale, BDRS), on direct medical, direct non-medical and informal care costs. Models were estimated separately for baseline and longitudinal data. Results: At baseline, DS was significantly associated with informal cost (marginal effect ⫽ $1,690) while BDRS was significantly associated with direct medical cost (marginal effect ⫽ $1,406). Longitudinal analyses demonstrated that a one-point increase in DS was associated with a 5.7%, 10.5%, and 4.1% increase in direct medical care cost, direct non-medical care cost, and informal care cost, respectively. A one-point increase in BDRS was associated with a 7.6%, 3.9%, and 8.7% increase in direct medical care cost, direct non-medical care cost, and informal care cost, respectively. Conclusions: Both patient dependence and functional impairment are significantly associated with higher cost of care but relate to component costs differently. Small changes in both dependence and function were related to large changes in healthcare costs. Patient dependence and functional impairment are both important contributors to increasing costs in AD and should be considered in economics and outcomes research. O2-07-06
HOW FAMILIES WORK TO MAINTAIN CONVERSATIONAL COHERENCE DURING INTERACTIVE DINNER TIME TALK
Jeanne Katzman, UCLA, Los Angeles, CA, USA. Contact e-mail: [email protected] Background: An Alzheimer’s individual experiences increasingly impaired pragmatic skills. His or her ability to design utterances that are a contextually appropriate is compromised by impaired semantic language and, specifically pertinent to this paper, cognitive impairment and shortterm memory loss. Short term memory loss affects the ability recall informative utterances and occasions repeated questions or statements. As participation becomes more difficult, family members assume increasing responsibility to structure and organize the conversational interaction. “Speaking for the Alzheimer’s individual” is a common practice of healthy speakers working to normalize interaction. Methods: Thirty families in which one member had recent onset of Alzheimer’s Disease participated during a three year study. Each family had two videotaped dinner conversations which were later transcribed by Discourse Analysis. Both verbal and gestural communication was analyzed. Results: Responses of healthy family members to utterances of the Alzheimer’s individual were found to follow certain predictable patterns. Interactional sequences in which problematic utterances occurred such as word searches, ambiguous or contested utterances, or requests for information were identified and organized. There were three types of problematic utterances to which responses was not