Johnson Foundation’s Culture of Health framework can be modified into a Culture of Research frame... more Johnson Foundation’s Culture of Health framework can be modified into a Culture of Research framework to organize motivational strategies. Implementing this strategy could improve clinical trial enrollment, particularly in the ADRD community. The application of this conceptual framework will be tested this year through my dissertation research on clinical trial enrollment in the younger-onset ADRD population.
Human-animal interaction has been linked to health and social benefits for older adults. While pe... more Human-animal interaction has been linked to health and social benefits for older adults. While pets can play a positive role in healthy aging, not all pet owners experience the same benefits. The present study uses data on how pets impact the well-being of older adults, including those living alone from the National Poll on Healthy Aging (NPHA), a nationally representative household survey conducted in October 2018. A randomly selected, stratified sample of adults age 50 to 80 (n=2,051) completed the survey online. Over half reported having a pet; the majority had dogs (70%) and cats (50%). Companionship was the main reason for getting a pet (52%); the majority believed their pets helped them enjoy life, reduce stress, and connect with others. Pet owners living alone were
Background: Primary progressive aphasia (PPA) is a clinical dementia syndrome. Impairments in lan... more Background: Primary progressive aphasia (PPA) is a clinical dementia syndrome. Impairments in language (speaking, reading, writing, and understanding) are the primary and persistent symptoms. These impairments progress insidiously and devastate communication confidence, participation, and quality of life for persons living with PPA. Currently, there are no effective disease modifying treatments for PPA. Speech-language interventions hold promise for mitigating communication challenges and language symptoms. However, evidence regarding their efficacy in PPA is of low quality and there are currently no rigorous randomized trials. Method: Communication Bridge™-2 (CB2) is a Stage 2, superiority, single-blind, randomized, parallel group, activecontrol, behavioral clinical trial delivered virtually within a telehealth service delivery model to individuals with PPA. Ninety carefully characterized participants with clinically confirmed PPA will be randomized to one of two speechlanguage intervention arms: (1) Communication Bridge™ a dyadic intervention based in communication participation therapy models that incorporates salient training stimuli or (2) the control intervention a non-dyadic intervention based in impairment therapy models addressing word retrieval and language production that incorporates fixed stimuli. The superiority of Communication Bridge™ over the Control arm will be evaluated using primary outcomes of communication confidence and participation. Other outcomes include accuracy for trained words and scripts. Participants complete two therapy blocks over a 12-month period. Outcomes will be measured at baseline, at each therapy block, and at 12 months post enrollment.
Background: Despite the importance of persons with dementia (PWDs) engaging in advance care plann... more Background: Despite the importance of persons with dementia (PWDs) engaging in advance care planning (ACP) at a time when they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions, studies of ACP in PWDs are rare.Objective: We conducted an intervention development study to adapt an efficacious ACP intervention, SPIRIT (sharing patient's illness representations to increase trust), for PWDs in early stages (recent Montreal Cognitive Assessment [MoCA] score ≥13) and their surrogates and assess whether SPIRIT could help PWDs engage in ACP.Design: A formative expert panel review of the adapted SPIRIT, followed by a randomized trial with qualitative interviews, was conducted. Patient–surrogate dyads were randomized to SPIRIT in person (in a private room in a memory clinic) or SPIRIT remote (via videoconferencing from home).Setting/Subjects: Twenty-three dyads of PWDs and their surrogates were recruited from an outpatient brain health center. Participants completed preparedness outcome measures (dyad congruence on goals of care, patient decisional conflict, and surrogate decision-making confidence) at baseline and two to three days post-intervention, plus a semistructured interview. Levels of articulation of end-of-life wishes of PWDs during SPIRIT sessions were rated (3 = expressed wishes very coherently, 2 = somewhat coherently, and 1 = unable to express coherently).Results: All 23 were able to articulate their end-of-life wishes very or somewhat coherently during the SPIRIT session; of those, 14 PWDs had moderate dementia. While decision-making capacity was higher in PWDs who articulated their wishes very coherently, MoCA scores did not differ by articulation levels. PWDs and surrogates perceived SPIRIT as beneficial, but the preparedness outcomes did not change pre–post.Conclusions: SPIRIT engaged PWDs and surrogates in meaningful ACP discussions, but requires testing of efficacy and long-term outcomes.
Relational-focused, or family-centered care, relies on recognizing interactions between persons w... more Relational-focused, or family-centered care, relies on recognizing interactions between persons with dementia and their family and caregivers. These interactions hold the key to giving better care and developing improved practice and policy.Over several decades, the expectations of the roles of spouses, partners, family, and friends in the care of people with dementia have shifted. Researchers and clinicians have progressed from a focus on the biomedical symptoms to one that incorporates the psycho-social determinants of health. Consequently, more attention has been given to the influence that social relationships have on the well-being of people with dementia.A systemic view of the social network, parti- cularly of family, recognizes that the experience of dementia impacts the whole family. Person- centered care approaches support an asymme- trical model of care, despite the social context. Nolan et al. (2002) express the limitations of person-centered care by stating that "pe...
This presentation provides an intermediate report on the outcomes of the first twenty cohorts of ... more This presentation provides an intermediate report on the outcomes of the first twenty cohorts of family caregivers (N=220) engaged in a NIA‐supported randomized, three‐arm trial of Tele‐Savvy, a fully online version of the Savvy Caregiver, an evidence‐based in‐person psychoeducation program. Tele‐Savvy is specifically aimed at enhancing caregivers’ capacity to manage the day‐to‐day challenges of caregiving by promoting caregiving mastery; the intended outcome is the reduction of caregiving distress. Tele‐Savvy engages groups of 5‐8 caregivers in 7 weekly synchronous online groups led by a trained facilitator; in between, caregivers are provided with 36 daily video lessons they can view whenever and as often as they wish. Caregivers were recruited in cohorts of 15 from 34 states and 2 Canadian provinces and randomly assigned (in a 2:2:1 ratio) to immediate participation in Tele‐Savvy, an attention control condition (Healthy Living), or usual care.
Alzheimer’s and related dementias (ADRD) disproportionately affect the African American community... more Alzheimer’s and related dementias (ADRD) disproportionately affect the African American community. Brain donation, a crucial part of translational research, is less common among African American research participants compared to White research participants at Alzheimer’s Disease Research Centers (ADRCs) across the US. Existing literature suggests three categories of contributory factors for African Americans: concerns and misconceptions about brain research and brain donation; religious beliefs; and the role of the family. Existing knowledge of community interventions is limited. We conducted seven focus groups, stratified by brain donation intent and cognitive status, to capture the perspectives of African American research participants. Qualitative content analysis reveal the following contributory themes: personal connection to memory loss or dementia; altruism; spirituality/religion; historical and current racism in health care and research; trauma and objectification; trust; re...
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...
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...
American Journal of Alzheimer's Disease & Other Dementiasr, 2014
New strategies are needed to help people cope with the repercussions of neurodegenerative disorde... more New strategies are needed to help people cope with the repercussions of neurodegenerative disorders such as Alzheimer’s disease. Patients and caregivers face different challenges, but here we investigated an intervention tailored for this combined population. The program focused on training skills such as attending to the present moment nonjudgmentally, which may help reduce maladaptive emotional responses. Patients participated together with caregivers in weekly group sessions over 8 weeks. An assessment battery was individually administered before and after the program. Pre–post analyses revealed several benefits, including increased quality-of-life ratings, fewer depressive symptoms, and better subjective sleep quality. In addition, participants indicated that they were grateful for the opportunity to learn to apply mindfulness skills and that they would recommend the program to others. In conclusion, mindfulness training can be beneficial for patients and their caregivers, it ca...
American Journal of Alzheimer's Disease & Other Dementiasr, 2014
New strategies are needed to help people cope with the repercussions of neurodegenerative disorde... more New strategies are needed to help people cope with the repercussions of neurodegenerative disorders such as Alzheimer’s disease. Patients and caregivers face different challenges, but here we investigated an intervention tailored for this combined population. The program focused on training skills such as attending to the present moment nonjudgmentally, which may help reduce maladaptive emotional responses. Patients participated together with caregivers in weekly group sessions over 8 weeks. An assessment battery was individually administered before and after the program. Pre–post analyses revealed several benefits, including increased quality-of-life ratings, fewer depressive symptoms, and better subjective sleep quality. In addition, participants indicated that they were grateful for the opportunity to learn to apply mindfulness skills and that they would recommend the program to others. In conclusion, mindfulness training can be beneficial for patients and their caregivers, it ca...
Primary progressive aphasia (PPA) typically results from a neurodegenerative disease such as fron... more Primary progressive aphasia (PPA) typically results from a neurodegenerative disease such as frontotemporal lobar degeneration or Alzheimer’s disease and is characterized by a progressive loss of specific language functions with relative sparing of other cognitive domains until later stages when widespread cognitive decline consistent with generalized dementia is more prevalent. PPA tends to appear earlier than most dementias, in late middle-age, and can result in a high degree of psychological and economic burden for the family. Thematic analysis of PPA caregiver studies reveal families are learning to adapt to not only declining language across communicative contexts and domains, but concomitant behavioral, social communication and personality changes over time. While there are several evidence-based dementia caregiver interventions, none are specifically designed for the PPA family caregiver. This pilot project, funded by the Emory University Roybal Center is the adaptation of an...
Frontotemporal dementia and primary progressive aphasia are relatively rare dementias, with avera... more Frontotemporal dementia and primary progressive aphasia are relatively rare dementias, with average age of onset in the 40s to 60s, and cause initial degeneration in behavior and language, respectively. Caregivers of diagnosed individuals report that there is little information available about these diseases. In response to this need, we designed and implemented a 3-part series of conferences aimed to educate and provide support to these caregivers. This article introduces the reader to the 2 disorders, highlights the need for specialized resources, and describes the execution of the conferences. The need for similar resources to be offered in other regions is discussed.
Background : Primary Progressive Aphasia (PPA) is a clinical dementia syndrome. Impairments in la... more Background : Primary Progressive Aphasia (PPA) is a clinical dementia syndrome. Impairments in language (speaking, reading, writing, and understanding) are the primary and persistent symptoms. These impairments progress insidiously and devastate communication confidence, participation, and quality of life for persons living with PPA. Currently, there are no effective disease modifying treatments for PPA. Speech-language interventions hold promise for mitigating communication challenges and language symptoms. However, evidence regarding their efficacy in PPA is of low quality and there are currently no rigorous randomized control trials. Method : Communication Bridge™-2 (CB2) is a Stage 2, superiority, single-blind, randomized, parallel group, active-control, behavioral clinical trial delivered virtually within a telehealth service delivery model to individuals with PPA. Ninety carefully characterized participants with clinically confirmed PPA will be randomized to one of two speech-...
Johnson Foundation’s Culture of Health framework can be modified into a Culture of Research frame... more Johnson Foundation’s Culture of Health framework can be modified into a Culture of Research framework to organize motivational strategies. Implementing this strategy could improve clinical trial enrollment, particularly in the ADRD community. The application of this conceptual framework will be tested this year through my dissertation research on clinical trial enrollment in the younger-onset ADRD population.
Human-animal interaction has been linked to health and social benefits for older adults. While pe... more Human-animal interaction has been linked to health and social benefits for older adults. While pets can play a positive role in healthy aging, not all pet owners experience the same benefits. The present study uses data on how pets impact the well-being of older adults, including those living alone from the National Poll on Healthy Aging (NPHA), a nationally representative household survey conducted in October 2018. A randomly selected, stratified sample of adults age 50 to 80 (n=2,051) completed the survey online. Over half reported having a pet; the majority had dogs (70%) and cats (50%). Companionship was the main reason for getting a pet (52%); the majority believed their pets helped them enjoy life, reduce stress, and connect with others. Pet owners living alone were
Background: Primary progressive aphasia (PPA) is a clinical dementia syndrome. Impairments in lan... more Background: Primary progressive aphasia (PPA) is a clinical dementia syndrome. Impairments in language (speaking, reading, writing, and understanding) are the primary and persistent symptoms. These impairments progress insidiously and devastate communication confidence, participation, and quality of life for persons living with PPA. Currently, there are no effective disease modifying treatments for PPA. Speech-language interventions hold promise for mitigating communication challenges and language symptoms. However, evidence regarding their efficacy in PPA is of low quality and there are currently no rigorous randomized trials. Method: Communication Bridge™-2 (CB2) is a Stage 2, superiority, single-blind, randomized, parallel group, activecontrol, behavioral clinical trial delivered virtually within a telehealth service delivery model to individuals with PPA. Ninety carefully characterized participants with clinically confirmed PPA will be randomized to one of two speechlanguage intervention arms: (1) Communication Bridge™ a dyadic intervention based in communication participation therapy models that incorporates salient training stimuli or (2) the control intervention a non-dyadic intervention based in impairment therapy models addressing word retrieval and language production that incorporates fixed stimuli. The superiority of Communication Bridge™ over the Control arm will be evaluated using primary outcomes of communication confidence and participation. Other outcomes include accuracy for trained words and scripts. Participants complete two therapy blocks over a 12-month period. Outcomes will be measured at baseline, at each therapy block, and at 12 months post enrollment.
Background: Despite the importance of persons with dementia (PWDs) engaging in advance care plann... more Background: Despite the importance of persons with dementia (PWDs) engaging in advance care planning (ACP) at a time when they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions, studies of ACP in PWDs are rare.Objective: We conducted an intervention development study to adapt an efficacious ACP intervention, SPIRIT (sharing patient's illness representations to increase trust), for PWDs in early stages (recent Montreal Cognitive Assessment [MoCA] score ≥13) and their surrogates and assess whether SPIRIT could help PWDs engage in ACP.Design: A formative expert panel review of the adapted SPIRIT, followed by a randomized trial with qualitative interviews, was conducted. Patient–surrogate dyads were randomized to SPIRIT in person (in a private room in a memory clinic) or SPIRIT remote (via videoconferencing from home).Setting/Subjects: Twenty-three dyads of PWDs and their surrogates were recruited from an outpatient brain health center. Participants completed preparedness outcome measures (dyad congruence on goals of care, patient decisional conflict, and surrogate decision-making confidence) at baseline and two to three days post-intervention, plus a semistructured interview. Levels of articulation of end-of-life wishes of PWDs during SPIRIT sessions were rated (3 = expressed wishes very coherently, 2 = somewhat coherently, and 1 = unable to express coherently).Results: All 23 were able to articulate their end-of-life wishes very or somewhat coherently during the SPIRIT session; of those, 14 PWDs had moderate dementia. While decision-making capacity was higher in PWDs who articulated their wishes very coherently, MoCA scores did not differ by articulation levels. PWDs and surrogates perceived SPIRIT as beneficial, but the preparedness outcomes did not change pre–post.Conclusions: SPIRIT engaged PWDs and surrogates in meaningful ACP discussions, but requires testing of efficacy and long-term outcomes.
Relational-focused, or family-centered care, relies on recognizing interactions between persons w... more Relational-focused, or family-centered care, relies on recognizing interactions between persons with dementia and their family and caregivers. These interactions hold the key to giving better care and developing improved practice and policy.Over several decades, the expectations of the roles of spouses, partners, family, and friends in the care of people with dementia have shifted. Researchers and clinicians have progressed from a focus on the biomedical symptoms to one that incorporates the psycho-social determinants of health. Consequently, more attention has been given to the influence that social relationships have on the well-being of people with dementia.A systemic view of the social network, parti- cularly of family, recognizes that the experience of dementia impacts the whole family. Person- centered care approaches support an asymme- trical model of care, despite the social context. Nolan et al. (2002) express the limitations of person-centered care by stating that "pe...
This presentation provides an intermediate report on the outcomes of the first twenty cohorts of ... more This presentation provides an intermediate report on the outcomes of the first twenty cohorts of family caregivers (N=220) engaged in a NIA‐supported randomized, three‐arm trial of Tele‐Savvy, a fully online version of the Savvy Caregiver, an evidence‐based in‐person psychoeducation program. Tele‐Savvy is specifically aimed at enhancing caregivers’ capacity to manage the day‐to‐day challenges of caregiving by promoting caregiving mastery; the intended outcome is the reduction of caregiving distress. Tele‐Savvy engages groups of 5‐8 caregivers in 7 weekly synchronous online groups led by a trained facilitator; in between, caregivers are provided with 36 daily video lessons they can view whenever and as often as they wish. Caregivers were recruited in cohorts of 15 from 34 states and 2 Canadian provinces and randomly assigned (in a 2:2:1 ratio) to immediate participation in Tele‐Savvy, an attention control condition (Healthy Living), or usual care.
Alzheimer’s and related dementias (ADRD) disproportionately affect the African American community... more Alzheimer’s and related dementias (ADRD) disproportionately affect the African American community. Brain donation, a crucial part of translational research, is less common among African American research participants compared to White research participants at Alzheimer’s Disease Research Centers (ADRCs) across the US. Existing literature suggests three categories of contributory factors for African Americans: concerns and misconceptions about brain research and brain donation; religious beliefs; and the role of the family. Existing knowledge of community interventions is limited. We conducted seven focus groups, stratified by brain donation intent and cognitive status, to capture the perspectives of African American research participants. Qualitative content analysis reveal the following contributory themes: personal connection to memory loss or dementia; altruism; spirituality/religion; historical and current racism in health care and research; trauma and objectification; trust; re...
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...
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...
American Journal of Alzheimer's Disease & Other Dementiasr, 2014
New strategies are needed to help people cope with the repercussions of neurodegenerative disorde... more New strategies are needed to help people cope with the repercussions of neurodegenerative disorders such as Alzheimer’s disease. Patients and caregivers face different challenges, but here we investigated an intervention tailored for this combined population. The program focused on training skills such as attending to the present moment nonjudgmentally, which may help reduce maladaptive emotional responses. Patients participated together with caregivers in weekly group sessions over 8 weeks. An assessment battery was individually administered before and after the program. Pre–post analyses revealed several benefits, including increased quality-of-life ratings, fewer depressive symptoms, and better subjective sleep quality. In addition, participants indicated that they were grateful for the opportunity to learn to apply mindfulness skills and that they would recommend the program to others. In conclusion, mindfulness training can be beneficial for patients and their caregivers, it ca...
American Journal of Alzheimer's Disease & Other Dementiasr, 2014
New strategies are needed to help people cope with the repercussions of neurodegenerative disorde... more New strategies are needed to help people cope with the repercussions of neurodegenerative disorders such as Alzheimer’s disease. Patients and caregivers face different challenges, but here we investigated an intervention tailored for this combined population. The program focused on training skills such as attending to the present moment nonjudgmentally, which may help reduce maladaptive emotional responses. Patients participated together with caregivers in weekly group sessions over 8 weeks. An assessment battery was individually administered before and after the program. Pre–post analyses revealed several benefits, including increased quality-of-life ratings, fewer depressive symptoms, and better subjective sleep quality. In addition, participants indicated that they were grateful for the opportunity to learn to apply mindfulness skills and that they would recommend the program to others. In conclusion, mindfulness training can be beneficial for patients and their caregivers, it ca...
Primary progressive aphasia (PPA) typically results from a neurodegenerative disease such as fron... more Primary progressive aphasia (PPA) typically results from a neurodegenerative disease such as frontotemporal lobar degeneration or Alzheimer’s disease and is characterized by a progressive loss of specific language functions with relative sparing of other cognitive domains until later stages when widespread cognitive decline consistent with generalized dementia is more prevalent. PPA tends to appear earlier than most dementias, in late middle-age, and can result in a high degree of psychological and economic burden for the family. Thematic analysis of PPA caregiver studies reveal families are learning to adapt to not only declining language across communicative contexts and domains, but concomitant behavioral, social communication and personality changes over time. While there are several evidence-based dementia caregiver interventions, none are specifically designed for the PPA family caregiver. This pilot project, funded by the Emory University Roybal Center is the adaptation of an...
Frontotemporal dementia and primary progressive aphasia are relatively rare dementias, with avera... more Frontotemporal dementia and primary progressive aphasia are relatively rare dementias, with average age of onset in the 40s to 60s, and cause initial degeneration in behavior and language, respectively. Caregivers of diagnosed individuals report that there is little information available about these diseases. In response to this need, we designed and implemented a 3-part series of conferences aimed to educate and provide support to these caregivers. This article introduces the reader to the 2 disorders, highlights the need for specialized resources, and describes the execution of the conferences. The need for similar resources to be offered in other regions is discussed.
Background : Primary Progressive Aphasia (PPA) is a clinical dementia syndrome. Impairments in la... more Background : Primary Progressive Aphasia (PPA) is a clinical dementia syndrome. Impairments in language (speaking, reading, writing, and understanding) are the primary and persistent symptoms. These impairments progress insidiously and devastate communication confidence, participation, and quality of life for persons living with PPA. Currently, there are no effective disease modifying treatments for PPA. Speech-language interventions hold promise for mitigating communication challenges and language symptoms. However, evidence regarding their efficacy in PPA is of low quality and there are currently no rigorous randomized control trials. Method : Communication Bridge™-2 (CB2) is a Stage 2, superiority, single-blind, randomized, parallel group, active-control, behavioral clinical trial delivered virtually within a telehealth service delivery model to individuals with PPA. Ninety carefully characterized participants with clinically confirmed PPA will be randomized to one of two speech-...
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Papers by Darby Morhardt