- Email: [email protected]
IMPACT OF A WELLNESS PROGRAM FOR PEOPLE WITH YOUNG ONSET DEMENTIAS AND THEIR CARE PARTNERS
P786
Poster Presentations: Monday, July 25, 2016
Background: Most presume the diagnosis of MCI or early dementia to be a negative experience, yet we know from studies of other chronic health conditions that “even the darkest cloud may have a silver lining”. The Silver Lining Questionnaire was developed and has been validated to assess the psychological impact of chronic health conditions on positive wellbeing in affected individuals. The present study was undertaken to examine this phenomena in those diagnosed with MCI or early dementia. Methods: Observational study of the University of Kentucky Alzheimer’s Disease Center cohort subjects with MCI and early dementia (n¼48). Participants were administered the Silver Lining Questionnaire. Standard descriptive statistical methods were used to evaluate neuropsychiatric symptom change in this preliminary study. Results: Subjects were 78.968.6 years of age, 38% male, with 16.463.2 years of education, MMSE 26.062.8, CDR global score 0.560.1, and CDR sum of boxes 1.761.1. Forty seven percent of subjects surveyed reported positive scores on the Silver Lining Questionnaire. Greater than 50% positive response rates were seen for questions regarding 1) appreciation and acceptance of life, 2) less concerns about failure, 3) self-reflection, tolerance of others, and courage to face problems in life, 4) strengthened relationships and new opportunities to meet people. No differences were seen between subjects on basic demographic or clinical variables based on diagnosis or scores on the Silver Lining Questionnaire. Conclusions: These data demonstrate that positive changes in outlook on life are not only possible, but are as common as negative changes. Further studies of variables or interventions that could enhance life satisfaction in dementia could have a positive impact on the more than 50% of patients that cannot find their “silver lining” yet.
P2-368
IMPACT OF A WELLNESS PROGRAM FOR PEOPLE WITH YOUNG ONSET DEMENTIAS AND THEIR CARE PARTNERS
Ekta Hattangady, Romina Oliverio, Alzheimer Society of Toronto, Toronto, ON, Canada. Contact e-mail: [email protected] Background: People with Young Onset Dementia (YOD) and their
care partners are in their 40s, 50s and 60s. They may be still in the work force, have young children, and have limited financial means. Changing roles impact relationships within a family and with the larger community. They may experience stigma, in part because of the myth that dementia impacts only the elderly. Existing services are mostly geared towards the elderly. Together, these factors can lead to social isolation. Methods: The Boomers Club is a weekly, 8-session wellness program blending physical exercise, music, and brain stimulation activities, offered free of charge to people with YOD and their care partners. The program uses a relationship-centered approach combining structured and flexible programming. The program pilot was open to people with YOD in the early to middle stages. Everyone who expressed interest was accepted into the program and modifications were made to make it inclusive. People with YOD who did not have a care partner were paired with a trained volunteer. The program was facilitated by an Alzheimer Society of Toronto Social Worker and a Program Coordinator, supported by two trained volunteers. Results: 6 people with YOD and 7 care partners from diverse ethno-cultural backgrounds attended the pilot. The participants with YOD ranged in age from 41 - 66 years. Their care partners were either spouses or adult children. During individual interviews and group feedback sessions, participants reported feeling better about their
relationships with family and friends, reduced isolation, an increased sense of belonging and greater self- confidence. They also expressed a greater awareness of community resources and their ability to access these. Based on participants’ request for continued programming for YOD, this program will now be offered twice a year through the Alzheimer Society of Toronto. Conclusions: This program is unique in the Greater Toronto Area and among the few programs in Canada that provide direct and specialized services to people with YOD and their care partners. While the number of people living with YOD is substantially lower than older adults, their needs are distinct and call for more widespread services and research on impact of those services. P2-369
PSYCHOSOCIAL AND EDUCATION PROGRAMS FOR FAMILIES WITH NEURODEGENERATIVE DISEASES IN ANTIOQUIA, COLOMBIA: THE NEUROSCIENCE GROUP OF ANTIOQUIA SOCIAL PLAN
Paula Ospina Lopera1, Claramonika Uribe1, Lucia Madrigal1, Amanda Saldarriaga1, Francisco Piedrahita1, Diana Alzate1, Alexander Navarro1, Alejandra Ruiz1, William Cho2, Robert Paul2, Jessica B. Langbaum3, Pierre N. Tariot3, Eric M. Reiman3, Silvia Rios Romenets1, Francisco Lopera4, 1Neurosciences Group of Antioquia, University of Antioquia, Medellin, Colombia; 2Genentech, Inc, South San Francisco, CA, USA; 3Banner Alzheimer’s Institute, Phoenix, AZ, USA; 4Grupo de Neurociencias, Universidad de Antioquia, Medellin, Colombia. Contact e-mail: [email protected] Background: Since the inception of its Alzheimer’s disease research
program, the Neuroscience Group of Antioquia (GNA) has provided information, education, and social support for affected individuals, family caregivers, and other family members affected by Alzheimer’s disease and other neurodegenerative diseases. These diseases are associated with a range of personal and social challenges, which can affect the entire family. In order to address this problem, GNA, in collaboration with Genentech and Banner Alzheimer’s Institute, has introduced Social Plan, consisting of programs to assist affected individuals and their families, provide coping strategies, support their participation in relevant research, and improve the quality of their lives. Methods: Health professionals have designed, implemented, refined, coordinated and overseen the program to help address the needs of patients, family caregivers, and other family members. Workshops on cognitive stimulation, painting, chorus, dance, crafts, support groups, care of the caregiver and meetings with young people to provide them support about the disease and their family environment, have been attended by affected persons and family members, many of whom are enrolled in the Colombian Alzheimer’s Prevention Initiative (API) Registry. The workshops are tailored to features and needs of the target population, such as the individuals’ age, place of residence and family role, and all services are provided whether or not individuals participate in any research studies. Results: The Social Plan has enrolled 760 people, including affected individuals, family caregivers and other immediate and more distant family members from the affected kindreds. Education around the disease and home patient care has been enhanced by the development of brochures, booklets and manuals designed by GNA to address particular needs and characteristics of the population. Conclusions: The Social Plan provides information, education, activities and support for families affected by Alzheimer’s disease and other neurodegenerative diseases of genetic origin. Participation in the Social Plan does not require patients and other family members to participate in the
Poster Presentations: Monday, July 25, 2016
Background: Most presume the diagnosis of MCI or early dementia to be a negative experience, yet we know from studies of other chronic health conditions that “even the darkest cloud may have a silver lining”. The Silver Lining Questionnaire was developed and has been validated to assess the psychological impact of chronic health conditions on positive wellbeing in affected individuals. The present study was undertaken to examine this phenomena in those diagnosed with MCI or early dementia. Methods: Observational study of the University of Kentucky Alzheimer’s Disease Center cohort subjects with MCI and early dementia (n¼48). Participants were administered the Silver Lining Questionnaire. Standard descriptive statistical methods were used to evaluate neuropsychiatric symptom change in this preliminary study. Results: Subjects were 78.968.6 years of age, 38% male, with 16.463.2 years of education, MMSE 26.062.8, CDR global score 0.560.1, and CDR sum of boxes 1.761.1. Forty seven percent of subjects surveyed reported positive scores on the Silver Lining Questionnaire. Greater than 50% positive response rates were seen for questions regarding 1) appreciation and acceptance of life, 2) less concerns about failure, 3) self-reflection, tolerance of others, and courage to face problems in life, 4) strengthened relationships and new opportunities to meet people. No differences were seen between subjects on basic demographic or clinical variables based on diagnosis or scores on the Silver Lining Questionnaire. Conclusions: These data demonstrate that positive changes in outlook on life are not only possible, but are as common as negative changes. Further studies of variables or interventions that could enhance life satisfaction in dementia could have a positive impact on the more than 50% of patients that cannot find their “silver lining” yet.
P2-368
IMPACT OF A WELLNESS PROGRAM FOR PEOPLE WITH YOUNG ONSET DEMENTIAS AND THEIR CARE PARTNERS
Ekta Hattangady, Romina Oliverio, Alzheimer Society of Toronto, Toronto, ON, Canada. Contact e-mail: [email protected] Background: People with Young Onset Dementia (YOD) and their
care partners are in their 40s, 50s and 60s. They may be still in the work force, have young children, and have limited financial means. Changing roles impact relationships within a family and with the larger community. They may experience stigma, in part because of the myth that dementia impacts only the elderly. Existing services are mostly geared towards the elderly. Together, these factors can lead to social isolation. Methods: The Boomers Club is a weekly, 8-session wellness program blending physical exercise, music, and brain stimulation activities, offered free of charge to people with YOD and their care partners. The program uses a relationship-centered approach combining structured and flexible programming. The program pilot was open to people with YOD in the early to middle stages. Everyone who expressed interest was accepted into the program and modifications were made to make it inclusive. People with YOD who did not have a care partner were paired with a trained volunteer. The program was facilitated by an Alzheimer Society of Toronto Social Worker and a Program Coordinator, supported by two trained volunteers. Results: 6 people with YOD and 7 care partners from diverse ethno-cultural backgrounds attended the pilot. The participants with YOD ranged in age from 41 - 66 years. Their care partners were either spouses or adult children. During individual interviews and group feedback sessions, participants reported feeling better about their
relationships with family and friends, reduced isolation, an increased sense of belonging and greater self- confidence. They also expressed a greater awareness of community resources and their ability to access these. Based on participants’ request for continued programming for YOD, this program will now be offered twice a year through the Alzheimer Society of Toronto. Conclusions: This program is unique in the Greater Toronto Area and among the few programs in Canada that provide direct and specialized services to people with YOD and their care partners. While the number of people living with YOD is substantially lower than older adults, their needs are distinct and call for more widespread services and research on impact of those services. P2-369
PSYCHOSOCIAL AND EDUCATION PROGRAMS FOR FAMILIES WITH NEURODEGENERATIVE DISEASES IN ANTIOQUIA, COLOMBIA: THE NEUROSCIENCE GROUP OF ANTIOQUIA SOCIAL PLAN
Paula Ospina Lopera1, Claramonika Uribe1, Lucia Madrigal1, Amanda Saldarriaga1, Francisco Piedrahita1, Diana Alzate1, Alexander Navarro1, Alejandra Ruiz1, William Cho2, Robert Paul2, Jessica B. Langbaum3, Pierre N. Tariot3, Eric M. Reiman3, Silvia Rios Romenets1, Francisco Lopera4, 1Neurosciences Group of Antioquia, University of Antioquia, Medellin, Colombia; 2Genentech, Inc, South San Francisco, CA, USA; 3Banner Alzheimer’s Institute, Phoenix, AZ, USA; 4Grupo de Neurociencias, Universidad de Antioquia, Medellin, Colombia. Contact e-mail: [email protected] Background: Since the inception of its Alzheimer’s disease research
program, the Neuroscience Group of Antioquia (GNA) has provided information, education, and social support for affected individuals, family caregivers, and other family members affected by Alzheimer’s disease and other neurodegenerative diseases. These diseases are associated with a range of personal and social challenges, which can affect the entire family. In order to address this problem, GNA, in collaboration with Genentech and Banner Alzheimer’s Institute, has introduced Social Plan, consisting of programs to assist affected individuals and their families, provide coping strategies, support their participation in relevant research, and improve the quality of their lives. Methods: Health professionals have designed, implemented, refined, coordinated and overseen the program to help address the needs of patients, family caregivers, and other family members. Workshops on cognitive stimulation, painting, chorus, dance, crafts, support groups, care of the caregiver and meetings with young people to provide them support about the disease and their family environment, have been attended by affected persons and family members, many of whom are enrolled in the Colombian Alzheimer’s Prevention Initiative (API) Registry. The workshops are tailored to features and needs of the target population, such as the individuals’ age, place of residence and family role, and all services are provided whether or not individuals participate in any research studies. Results: The Social Plan has enrolled 760 people, including affected individuals, family caregivers and other immediate and more distant family members from the affected kindreds. Education around the disease and home patient care has been enhanced by the development of brochures, booklets and manuals designed by GNA to address particular needs and characteristics of the population. Conclusions: The Social Plan provides information, education, activities and support for families affected by Alzheimer’s disease and other neurodegenerative diseases of genetic origin. Participation in the Social Plan does not require patients and other family members to participate in the