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Linda Boise

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Charles University, Prague

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McGill University

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University of Southern California

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Pompeu Fabra University

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Papers by Linda Boise

The Demise of the Catastrophic Coverage Act: A Reflection of the Inability of Congress to Respond to Changing Needs of the Elderly and their Families

The Journal of Sociology Social Welfare, 2015

Coverage Act of 1988 in the context of the needs of the elderly and their families. Although the ... more Coverage Act of 1988 in the context of the needs of the elderly and their families. Although the surtax imposed on middle and upper income elderly was the ostensible reason for the anger this Act generated among the elderly, other factors related to the concerns and needs of the elderly and of their families also prevented it from being supported. This article discusses the characteristics of the Catastrophic Coverage Act as a continuation of the historical bias of Medicare in favor of acute medical care and as an effort by Congress to restrain federal health care costs. Despite shifting socio-demographic realities which have increased the burden for many families of the elderly, the Catastrophic Act did little to meet their needs. The implications for future legislation to address these problems are also discussed.

Family Responsibilities and Absenteeism: Employees Caring for Parents versus Employees Caring for Children

by Linda Boise and Margaret Neal

Journal of Managerial Issues, Jun 22, 1996

... Em-ployees with these types of informal caregiving duties have also been found to have greate... more

Improving Dementia Care Through Physician Education: Some Challenges

Clinical Gerontologist, Oct 11, 2008

... According to a recent national study, the distribution of allopathic geri-atricians varied in... more

Facing chronic illness: the family support model and its benefits

Patient education and counseling, 1996

With the aging of the population and the evolving health care system, it is more important than e... more With the aging of the population and the evolving health care system, it is more important than ever before that individuals be actively involved in selfcare activities and that individuals and families receive education and support to help them cope with chronic illness. This article describes a model family support program which operates within a hospital setting to provide information, education, support, and respite services. This model is based on an extensive research base which underscores the value of this model both for the individuals and families involved and for the health care system.

Improving Dementia Care Through Physician Education: Some Challenges

Clinical Gerontologist, 2006

... According to a recent national study, the distribution of allopathic geri-atricians varied in... more

Willingness to Be a Brain Donor: A Survey of Research Volunteers From 4 Racial/Ethnic Groups

by Linda Boise, Travonia Hughes, Andrea Denny, and Darby Morhardt

Alzheimer disease and associated disorders, Jan 24, 2016

Racial and ethnic groups are under-represented among research subjects who assent to brain donati... more Racial and ethnic groups are under-represented among research subjects who assent to brain donation in Alzheimer disease research studies. There has been little research on this important topic. Although there are some studies that have investigated the barriers to brain donation among African American study volunteers, there is no known research on the factors that influence whether or not Asians or Latinos are willing to donate their brains for research. African American, Caucasian, Asian, and Latino research volunteers were surveyed at 15 Alzheimer Disease Centers to identify predictors of willingness to assent to brain donation. Positive predictors included older age, Latino ethnicity, understanding of how the brain is used by researchers, and understanding of what participants need to do to ensure that their brain will be donated. Negative predictors included African/African American race, belief that the body should remain whole at burial, and concern that researchers might no...

The family's role in person-centered care: practice considerations

Journal of Psychosocial Nursing and Mental Health Services, May 1, 2004

Effective implementation of person-centered care requires a shared understanding and commitment t... more Effective implementation of person-centered care requires a shared understanding and commitment to make it a reality by administrative personnel, direct care providers, and residents and their family members. Long-term care facilities must seek ways to engage residents' families in person-centered care through its training, policies, care planning, and documentation. Doing so may require revisions to policies and work practices, and ongoing leadership efforts to maintain this care framework within the realities of staff turnover and regulatory requirements. Developing protocols and procedures that facilitate family members' communication with staff and build consensus and shared values will result in a system that represents and honors the unique perspectives, values, and needs of each resident receiving care. It is important for facility leadership to set the tone for acknowledging the importance of family involvement in person-centered care by modeling acceptance of concerns and criticisms as valid and by acknowledging that direct care providers, residents, and their family members have a voice in care decisions. Such an approach has the greatest chance of success in promoting person-centered care and the shared values necessary to ensure its successful implementation.

Empowering Family Caregivers: The Powerful Tools for Caregiving Program

Http Dx Doi Org 10 1080 03601270590962523, Feb 23, 2007

Will My Soul Go to Heaven If They Take My Brain? Beliefs and Worries About Brain Donation Among Four Ethnic Groups

The Gerontologist, Jan 2, 2016

Studying the brain through autopsy is an essential component of Alzheimer's disease research.... more Studying the brain through autopsy is an essential component of Alzheimer's disease research. Racial and ethnic minorities are underrepresented in Alzheimer's research generally and, in particular, in the number of completed brain autopsies. We explored beliefs about and attitudes toward brain donation among African American, Chinese, Caucasian, and Latino research subjects and their family members through focus groups at 4 NIH-funded Alzheimer's Disease Centers. Eighteen focus groups were conducted with 61 research subjects and 34 family members. Because the primary purpose of the focus groups was to identify the range of considerations that may influence the decision to participate in brain donation, data from focus groups were pooled and then analyzed. We found that many of the concerns, attitudes, and beliefs about brain donation were similar across the 4 ethnic groups. Concerns and attitudes fell into 3 categories: (a) concerns and misconceptions about brain researc...

Absenteeism and stress among employed caregivers of the elderly, disabled adults, and children

by Linda Boise and Arthur Emlen

ABSTRACT

What's in a number? Counting the African population of Portland, Oregon: methods, issues and implications for community health collaborations

by Linda Boise and Anais Tuepker

International Journal of Migration, Health and Social Care, 2011

Purpose – Aware that “those who aren&amp;amp;amp;amp;amp;amp;amp;amp;amp;#x27;t counted don&a... more Purpose – Aware that “those who aren&amp;amp;amp;amp;amp;amp;amp;amp;amp;#x27;t counted don&amp;amp;amp;amp;amp;amp;amp;amp;amp;#x27;t count” in health program planning, a community coalition, called African Partnership for Health, attempts a current estimate of the African community living in Portland, Oregon, USA. This paper seeks to describe the findings. Design/methodology/approach – The paper&amp;amp;amp;amp;amp;amp;amp;amp;amp;#x27;s definition of the “African community” was crucially informed by community participation in the research

Willingness of older adults to share data and privacy concerns after exposure to unobtrusive home monitoring

Older adult participants in the Intelligent Systems for Assessment of Aging Changes study (ISAAC)... more Older adult participants in the Intelligent Systems for Assessment of Aging Changes study (ISAAC) carried out by the Oregon Center for Aging and Technology (ORCATECH) were surveyed regarding their attitudes about unobtrusive home monitoring and computer use at baseline and after one year (n=119). The survey was part of a longitudinal study using in-home sensor technology to detect cognitive changes and other health problems. Our primary objective was to measure willingness to share health or activity data with one&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;s doctor or family members and concerns about privacy or security of monitoring over one year of study participation. Differences in attitudes of participants with Mild Cognitive Impairment (MCI) compared to those with normal cognition were also examined. A high proportion (over 72%) of participants reported acceptance of in-home and computer monitoring and willingness to have data shared with their doctor or family members. However, a majority (60%) reported concerns related to privacy or security; these concerns increased after one year of participation. Few differences between participants with MCI and those with normal cognition were identified. Findings suggest that involvement in this unobtrusive in-home monitoring study may have raised awareness about the potential privacy risks of technology. Still, results show high acceptance, stable over time, of sharing information from monitoring systems with family members and doctors. Our findings have important implications for the deployment of technologies among older adults in research studies as well as in the general community.

The family's role in person-centered care: practice considerations

Journal of psychosocial nursing and mental health services, 2004

Effective implementation of person-centered care requires a shared understanding and commitment t... more Effective implementation of person-centered care requires a shared understanding and commitment to make it a reality by administrative personnel, direct care providers, and residents and their family members. Long-term care facilities must seek ways to engage residents' families in person-centered care through its training, policies, care planning, and documentation. Doing so may require revisions to policies and work practices, and ongoing leadership efforts to maintain this care framework within the realities of staff turnover and regulatory requirements. Developing protocols and procedures that facilitate family members' communication with staff and build consensus and shared values will result in a system that represents and honors the unique perspectives, values, and needs of each resident receiving care. It is important for facility leadership to set the tone for acknowledging the importance of family involvement in person-centered care by modeling acceptance of concer...

The Rural Older Adult Memory (ROAM) Study: A Practice-based Intervention to Improve Dementia Screening and Diagnosis

The Journal of the American Board of Family Medicine, 2010

The aim of the Rural Older Adult Memory (ROAM) pilot study was to evaluate the feasibility of scr... more

Intelligent Systems for Assessing Aging Changes: Home-Based, Unobtrusive, and Continuous Assessment of Aging

The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 2011

To describe a longitudinal community cohort study, Intelligent Systems for Assessing Aging Change... more

Dementia Assessment in Primary Care: Results From a Study in Three Managed Care Systems

The Journals of Gerontology Series A: Biological Sciences and Medical Sciences, 2004

Background. Prior research has found that dementia is often undiagnosed in primary care, but ther... more

Unobtrusive In-Home Monitoring of Cognitive and Physical Health: Reactions and Perceptions of Older Adults

Journal of Applied Gerontology, 2008

While the potential benefits of unobtrusive in-home sensing technologies for maintaining health a... more While the potential benefits of unobtrusive in-home sensing technologies for maintaining health and independence of older adults have been highlighted in recent research, little is known about their views toward such technology. The aims of this project were to identify monitoring needs and expectations of community-residing elderly and their family members. Focus groups were presented with examples of in-home monitoring devices and data output; participants were asked to consider whether the data showed information that was meaningful to them, and how and to whom they would like to have such data disseminated. Content analysis of transcripts revealed four dominant themes: maintaining independence, detecting cognitive decline, sharing of information, and the tradeoff between privacy and usefulness of monitoring. The acceptance by elderly of unobtrusive in-home monitoring was closely tied to perceived utility of data generated by such systems. Privacy concerns appeared to be less of an issue than anticipated in this sample.

Internet-Based Dementia Resources: Physician Attitudes and Practices

Journal of Applied Gerontology, 2011

Despite the potential of the internet for informing clinical practice, little is know about physi... more Despite the potential of the internet for informing clinical practice, little is know about physicians' use of and attitudes about internet use for dementia care. We surveyed 373 physicians to inform development of on-line dementia education resources. Two thirds reported using internet-based resources in their clinical practices at least three times per week; 61% participated in on-line continuing medical education. Three fourths agreed that internet-based resources are helpful in clinical care but most expressed mixed views about quality of available information. Respondents reported limited awareness and use of dementia-specific internet resources, but expressed an interest in such information regarding screening, treatment, community resources, and patient education. National Institute on Aging-funded Alzheimer's Disease Centers are in a unique position to disseminate on-line resources for physicians on dementia diagnosis, treatment, and care. Our study suggests that such a resource would be well received and utilized by physicians.

Diagnosing Dementia: Perspectives of Primary Care Physicians

The Gerontologist, 1999

Attitudes Toward the Diagnosis and Disclosure of Dementia Among Family Caregivers and Primary Care Physicians

The Gerontologist, 2004

Purpose: This study examined attitudes of caregivers and physicians toward assessing and diagnosi... more Purpose: This study examined attitudes of caregivers and physicians toward assessing and diagnosing dementia, with an emphasis on how a diagnosis is disclosed. Design and Methods: Seventeen focus group interviews were conducted with caregivers or physicians from three sites; 52 caregivers participated in nine interviews (three each at the three sites), and 39 physicians participated in eight interviews (three each at two sites; two at one site). Structured interview protocols were used to assess diagnostic disclosure, first reactions, and suggestions for improving the diagnostic process. Results: Caregivers recounted a highly negative emotional response to the disclosure, whereas many physicians reported that families handled the information well. Caregivers expressed a range of preferences for how the diagnosis should have been disclosed, from a direct approach to having the physician ease them into the results. Implications: Whenever possible, physicians should consult with the patient and family at the outset of the diagnostic process to better understand their preferences for diagnostic disclosure.

The Demise of the Catastrophic Coverage Act: A Reflection of the Inability of Congress to Respond to Changing Needs of the Elderly and their Families

The Journal of Sociology Social Welfare, 2015

Coverage Act of 1988 in the context of the needs of the elderly and their families. Although the ... more Coverage Act of 1988 in the context of the needs of the elderly and their families. Although the surtax imposed on middle and upper income elderly was the ostensible reason for the anger this Act generated among the elderly, other factors related to the concerns and needs of the elderly and of their families also prevented it from being supported. This article discusses the characteristics of the Catastrophic Coverage Act as a continuation of the historical bias of Medicare in favor of acute medical care and as an effort by Congress to restrain federal health care costs. Despite shifting socio-demographic realities which have increased the burden for many families of the elderly, the Catastrophic Act did little to meet their needs. The implications for future legislation to address these problems are also discussed.

Family Responsibilities and Absenteeism: Employees Caring for Parents versus Employees Caring for Children

by Linda Boise and Margaret Neal

Journal of Managerial Issues, Jun 22, 1996

... Em-ployees with these types of informal caregiving duties have also been found to have greate... more

Improving Dementia Care Through Physician Education: Some Challenges

Clinical Gerontologist, Oct 11, 2008

... According to a recent national study, the distribution of allopathic geri-atricians varied in... more

Facing chronic illness: the family support model and its benefits

Patient education and counseling, 1996

With the aging of the population and the evolving health care system, it is more important than e... more With the aging of the population and the evolving health care system, it is more important than ever before that individuals be actively involved in selfcare activities and that individuals and families receive education and support to help them cope with chronic illness. This article describes a model family support program which operates within a hospital setting to provide information, education, support, and respite services. This model is based on an extensive research base which underscores the value of this model both for the individuals and families involved and for the health care system.

Improving Dementia Care Through Physician Education: Some Challenges

Clinical Gerontologist, 2006

... According to a recent national study, the distribution of allopathic geri-atricians varied in... more

Willingness to Be a Brain Donor: A Survey of Research Volunteers From 4 Racial/Ethnic Groups

by Linda Boise, Travonia Hughes, Andrea Denny, and Darby Morhardt

Alzheimer disease and associated disorders, Jan 24, 2016

Racial and ethnic groups are under-represented among research subjects who assent to brain donati... more Racial and ethnic groups are under-represented among research subjects who assent to brain donation in Alzheimer disease research studies. There has been little research on this important topic. Although there are some studies that have investigated the barriers to brain donation among African American study volunteers, there is no known research on the factors that influence whether or not Asians or Latinos are willing to donate their brains for research. African American, Caucasian, Asian, and Latino research volunteers were surveyed at 15 Alzheimer Disease Centers to identify predictors of willingness to assent to brain donation. Positive predictors included older age, Latino ethnicity, understanding of how the brain is used by researchers, and understanding of what participants need to do to ensure that their brain will be donated. Negative predictors included African/African American race, belief that the body should remain whole at burial, and concern that researchers might no...

The family's role in person-centered care: practice considerations

Journal of Psychosocial Nursing and Mental Health Services, May 1, 2004

Effective implementation of person-centered care requires a shared understanding and commitment t... more Effective implementation of person-centered care requires a shared understanding and commitment to make it a reality by administrative personnel, direct care providers, and residents and their family members. Long-term care facilities must seek ways to engage residents' families in person-centered care through its training, policies, care planning, and documentation. Doing so may require revisions to policies and work practices, and ongoing leadership efforts to maintain this care framework within the realities of staff turnover and regulatory requirements. Developing protocols and procedures that facilitate family members' communication with staff and build consensus and shared values will result in a system that represents and honors the unique perspectives, values, and needs of each resident receiving care. It is important for facility leadership to set the tone for acknowledging the importance of family involvement in person-centered care by modeling acceptance of concerns and criticisms as valid and by acknowledging that direct care providers, residents, and their family members have a voice in care decisions. Such an approach has the greatest chance of success in promoting person-centered care and the shared values necessary to ensure its successful implementation.

Empowering Family Caregivers: The Powerful Tools for Caregiving Program

Http Dx Doi Org 10 1080 03601270590962523, Feb 23, 2007

Will My Soul Go to Heaven If They Take My Brain? Beliefs and Worries About Brain Donation Among Four Ethnic Groups

The Gerontologist, Jan 2, 2016

Studying the brain through autopsy is an essential component of Alzheimer's disease research.... more Studying the brain through autopsy is an essential component of Alzheimer's disease research. Racial and ethnic minorities are underrepresented in Alzheimer's research generally and, in particular, in the number of completed brain autopsies. We explored beliefs about and attitudes toward brain donation among African American, Chinese, Caucasian, and Latino research subjects and their family members through focus groups at 4 NIH-funded Alzheimer's Disease Centers. Eighteen focus groups were conducted with 61 research subjects and 34 family members. Because the primary purpose of the focus groups was to identify the range of considerations that may influence the decision to participate in brain donation, data from focus groups were pooled and then analyzed. We found that many of the concerns, attitudes, and beliefs about brain donation were similar across the 4 ethnic groups. Concerns and attitudes fell into 3 categories: (a) concerns and misconceptions about brain researc...

Absenteeism and stress among employed caregivers of the elderly, disabled adults, and children

by Linda Boise and Arthur Emlen

ABSTRACT

What's in a number? Counting the African population of Portland, Oregon: methods, issues and implications for community health collaborations

by Linda Boise and Anais Tuepker

International Journal of Migration, Health and Social Care, 2011

Purpose – Aware that “those who aren&amp;amp;amp;amp;amp;amp;amp;amp;amp;#x27;t counted don&a... more Purpose – Aware that “those who aren&amp;amp;amp;amp;amp;amp;amp;amp;amp;#x27;t counted don&amp;amp;amp;amp;amp;amp;amp;amp;amp;#x27;t count” in health program planning, a community coalition, called African Partnership for Health, attempts a current estimate of the African community living in Portland, Oregon, USA. This paper seeks to describe the findings. Design/methodology/approach – The paper&amp;amp;amp;amp;amp;amp;amp;amp;amp;#x27;s definition of the “African community” was crucially informed by community participation in the research

Willingness of older adults to share data and privacy concerns after exposure to unobtrusive home monitoring

Older adult participants in the Intelligent Systems for Assessment of Aging Changes study (ISAAC)... more Older adult participants in the Intelligent Systems for Assessment of Aging Changes study (ISAAC) carried out by the Oregon Center for Aging and Technology (ORCATECH) were surveyed regarding their attitudes about unobtrusive home monitoring and computer use at baseline and after one year (n=119). The survey was part of a longitudinal study using in-home sensor technology to detect cognitive changes and other health problems. Our primary objective was to measure willingness to share health or activity data with one&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;s doctor or family members and concerns about privacy or security of monitoring over one year of study participation. Differences in attitudes of participants with Mild Cognitive Impairment (MCI) compared to those with normal cognition were also examined. A high proportion (over 72%) of participants reported acceptance of in-home and computer monitoring and willingness to have data shared with their doctor or family members. However, a majority (60%) reported concerns related to privacy or security; these concerns increased after one year of participation. Few differences between participants with MCI and those with normal cognition were identified. Findings suggest that involvement in this unobtrusive in-home monitoring study may have raised awareness about the potential privacy risks of technology. Still, results show high acceptance, stable over time, of sharing information from monitoring systems with family members and doctors. Our findings have important implications for the deployment of technologies among older adults in research studies as well as in the general community.

The family's role in person-centered care: practice considerations

Journal of psychosocial nursing and mental health services, 2004

Effective implementation of person-centered care requires a shared understanding and commitment t... more Effective implementation of person-centered care requires a shared understanding and commitment to make it a reality by administrative personnel, direct care providers, and residents and their family members. Long-term care facilities must seek ways to engage residents' families in person-centered care through its training, policies, care planning, and documentation. Doing so may require revisions to policies and work practices, and ongoing leadership efforts to maintain this care framework within the realities of staff turnover and regulatory requirements. Developing protocols and procedures that facilitate family members' communication with staff and build consensus and shared values will result in a system that represents and honors the unique perspectives, values, and needs of each resident receiving care. It is important for facility leadership to set the tone for acknowledging the importance of family involvement in person-centered care by modeling acceptance of concer...

The Rural Older Adult Memory (ROAM) Study: A Practice-based Intervention to Improve Dementia Screening and Diagnosis

The Journal of the American Board of Family Medicine, 2010

The aim of the Rural Older Adult Memory (ROAM) pilot study was to evaluate the feasibility of scr... more

Intelligent Systems for Assessing Aging Changes: Home-Based, Unobtrusive, and Continuous Assessment of Aging

The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 2011

To describe a longitudinal community cohort study, Intelligent Systems for Assessing Aging Change... more

Dementia Assessment in Primary Care: Results From a Study in Three Managed Care Systems

The Journals of Gerontology Series A: Biological Sciences and Medical Sciences, 2004

Background. Prior research has found that dementia is often undiagnosed in primary care, but ther... more

Unobtrusive In-Home Monitoring of Cognitive and Physical Health: Reactions and Perceptions of Older Adults

Journal of Applied Gerontology, 2008

While the potential benefits of unobtrusive in-home sensing technologies for maintaining health a... more While the potential benefits of unobtrusive in-home sensing technologies for maintaining health and independence of older adults have been highlighted in recent research, little is known about their views toward such technology. The aims of this project were to identify monitoring needs and expectations of community-residing elderly and their family members. Focus groups were presented with examples of in-home monitoring devices and data output; participants were asked to consider whether the data showed information that was meaningful to them, and how and to whom they would like to have such data disseminated. Content analysis of transcripts revealed four dominant themes: maintaining independence, detecting cognitive decline, sharing of information, and the tradeoff between privacy and usefulness of monitoring. The acceptance by elderly of unobtrusive in-home monitoring was closely tied to perceived utility of data generated by such systems. Privacy concerns appeared to be less of an issue than anticipated in this sample.

Internet-Based Dementia Resources: Physician Attitudes and Practices

Journal of Applied Gerontology, 2011

Despite the potential of the internet for informing clinical practice, little is know about physi... more Despite the potential of the internet for informing clinical practice, little is know about physicians' use of and attitudes about internet use for dementia care. We surveyed 373 physicians to inform development of on-line dementia education resources. Two thirds reported using internet-based resources in their clinical practices at least three times per week; 61% participated in on-line continuing medical education. Three fourths agreed that internet-based resources are helpful in clinical care but most expressed mixed views about quality of available information. Respondents reported limited awareness and use of dementia-specific internet resources, but expressed an interest in such information regarding screening, treatment, community resources, and patient education. National Institute on Aging-funded Alzheimer's Disease Centers are in a unique position to disseminate on-line resources for physicians on dementia diagnosis, treatment, and care. Our study suggests that such a resource would be well received and utilized by physicians.

Diagnosing Dementia: Perspectives of Primary Care Physicians

The Gerontologist, 1999

Attitudes Toward the Diagnosis and Disclosure of Dementia Among Family Caregivers and Primary Care Physicians

The Gerontologist, 2004

Purpose: This study examined attitudes of caregivers and physicians toward assessing and diagnosi... more Purpose: This study examined attitudes of caregivers and physicians toward assessing and diagnosing dementia, with an emphasis on how a diagnosis is disclosed. Design and Methods: Seventeen focus group interviews were conducted with caregivers or physicians from three sites; 52 caregivers participated in nine interviews (three each at the three sites), and 39 physicians participated in eight interviews (three each at two sites; two at one site). Structured interview protocols were used to assess diagnostic disclosure, first reactions, and suggestions for improving the diagnostic process. Results: Caregivers recounted a highly negative emotional response to the disclosure, whereas many physicians reported that families handled the information well. Caregivers expressed a range of preferences for how the diagnosis should have been disclosed, from a direct approach to having the physician ease them into the results. Implications: Whenever possible, physicians should consult with the patient and family at the outset of the diagnostic process to better understand their preferences for diagnostic disclosure.