Current Topics in Care
Exploring the Service and Support Needs of Families With Early-Onset Alzheimer’s Disease
American Journal of Alzheimer’s Disease & Other Dementias® 2014, Vol. 29(7) 596-600 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1533317514558160 aja.sagepub.com
Allison K. Gibson, PhD1, Keith A. Anderson, PhD2, and Sara Acocks, BSc3
Abstract Although often cast as a disease of later life, a growing number of people are being diagnosed with Alzheimer’s disease in their 50s and 60s. Early-onset Alzheimer’s disease (EOAD) poses special challenges and needs for individuals and their caregivers, such as employment and access to services. In this cross-sectional study, the researchers surveyed 81 (N ¼ 81) family caregivers to individuals with EOAD to identify service and support usage and need. Descriptive analyses revealed that families utilized a range of formal services (eg, adult day) and informal support from family and friends. In terms of challenges and needs, participants indicated that they struggled most with employment, benefits, and financial issues. Although most caregivers felt that they were coping well, they also indicated that their needs were not well understood by service providers and the public. These findings highlight the need to better understand and respond to the specific issues surrounding EOAD. Keywords early-onset Alzheimer’s disease, young-onset Alzheimer’s disease, caregiving, support needs
Diagnosed before the age of 65, early-onset Alzheimer’s disease (EOAD) accounts for approximately 5% of all cases of Alzheimer’s disease (AD) in the United States.1 The estimated 200 000 individuals diagnosed with EOAD and their families face specific challenges, given both the devastating impact and the anachronistic timing of the disease. Employment and access to benefits can be a challenge, as many with EOAD still need to work and have yet to reach an age where retirement benefits are available. Others may be raising children or providing care to their own parents. The strain of EOAD can also have a negative impact on family dynamics and relationships as most are ill-prepared to deal with such an unexpected and burdensome disease.2 Although researchers are beginning to cast a light on families faced with EOAD, few have focused on the families’ perspectives on living with EOAD. This leaves service providers with little information on the specific needs of this group and how to develop and direct services. In this study, the researchers explored the services used by families with EOAD, the support that they receive, their needs and unmet needs, and their perceptions of how others understand their experiences with this disease. The findings should help service provides better understand this population and the particular challenges of living with EOAD. Research has clearly shown that living with AD and caring for someone diagnosed with AD can impart immense physical, emotional, and social strains.3,4 Families with EOAD face many of the same challenges as those with AD, including the
physical demands of caregiving, mental health issues (eg, depression and anxiety), and lost opportunities and time for socialization and other activities.5,6 Researchers have found that families dealing with EOAD face additional challenges such as a disruption of their active roles in life, loss of future plans, changes in marital relations, and problems related to work and finances (for a review7). Such challenges are not unexpected, given the life stage in which EOAD is diagnosed. For many, the 50s and 60s are prime years in terms of family life, career, and future orientation toward retirement. Early, accurate, and definitive diagnoses have also been found to be an important need for families, as a lack of diagnosis can preclude individuals from qualifying for services.5,8 The needs of families with EOAD are many, yet services for this population are few. This is primarily a result of their young age, as most services for individuals with dementia and their caregivers are designed for older adults.9-11 Research has found that individuals with EOAD and their caregivers do not feel
1
Department of Social Work, Winthrop University, Rock Hill, SC, USA School of Social Work, University of Montana, Missoula, MT, USA 3 Sunrise on the Scioto—Sunrise Senior Living, Columbus, OH, USA 2
Corresponding Author: Allison K. Gibson, PhD, Department of Social Work, Winthrop University, 701 Oakland Ave., Rock Hill, SC 29732, USA. Email: [email protected]
Downloaded from aja.sagepub.com at NORTH DAKOTA STATE UNIV LIB on June 29, 2015
Gibson et al
597
like they ‘‘fit in’’ with support programs for older adults and are reluctant to utilize such services.12 The Alzheimer’s Association, a leading source of support in the United States, has stated that increasing services to this group is a priority; however, many service providers have yet to develop targeted programs.13 Individuals with EOAD and their caregivers may also have difficulty in finding family members to assist with caregiving. In cases with AD, adult children often assist with caregiving. This may not be the case with EOAD where children are often still young and are not in a position to assist with care.14 In addition to the challenges of accessing support and services, many individuals with EOAD encounter difficulties in qualifying for government programs. Some individuals may not be aware that they have EOAD or may have difficulty in obtaining a definitive diagnosis. This may preclude them from seeking benefits. Others may not meet strict requirements to quality for programs such as social security disability insurance, as the condition may not meet the definition for what constitutes a disability.13 Age again plays a factor in qualifying and accessing other programs, such as adult day services and transportation. Individuals with EOAD and their caregivers seem to be caught in a state of limbo—too young for a health care system designed to help older adults. Although we are beginning to learn more about EOAD, there have been relatively few studies that have addressed the services that families use and the needs that exist for this population. For example, a recent review article identified only 17 published articles that addressed the impact of EOAD on caregivers.7 This speaks to the need for additional research on this often overlooked population. The purpose of this study was to gain the caregiver’s perspective on (1) the services and support that is available and utilized by families with EOAD, (2) the needs and unmet needs of families with EOAD; and (3) the degree to which the challenges and needs of families with EOAD are perceived. The findings from this study are important on several levels. They add to the nascent literature on this topic and may serve as a stepping stone for future studies. The findings also afford valuable information for service providers in terms of program development and meeting the specific needs of this group.
Methods Sample The population for this cross-sectional study consisted of caregivers for individuals with EOAD. The authors collaborated with 5 chapters of the Alzheimer’s Association in the state of Ohio to contact and recruit participants. Each chapter maintains lists of family caregivers to individuals with EOAD. Packets containing a cover letter, a survey, and a stamped return envelope were mailed to each family caregiver on the lists of each chapter. A total of 315 packets were mailed. Of these, 54 were returned as ‘‘undeliverable’’ due to address changes, leaving 261 delivered packets. A total of 81 family caregivers (N ¼ 81) completed surveys, resulting in a response rate of 31%.
Data Collection and Analysis A focus group was held with family caregivers and service providers to help develop items for this survey. Three themes emerged from the focus group—(1) the challenges of providing care, (2) the challenges of accessing services and benefits, and (3) the desire for additional services tailored to meet the needs of caregivers and individuals with EOAD. These themes were reflected in the items included in the survey. The survey instrument contained items focused on the following: demographics, caregiving obligations, utilization of services (formal and informal), perceived importance of services, employment status, need for and access to financial services and benefits, and perceived understanding of the experiences of caregivers by the public and by service providers. Given the fact that burden is well understood in caregiving, the authors did not include a burden scale. The authors also intentionally limited the number of items to increase participation and to decrease time demands. Given the relative simplicity of the survey, data analysis consisted of frequencies and descriptive statistics computed using SYSTAT 13.
Results The final sample consisted of 81 family caregivers (N ¼ 81) to individuals diagnosed with EOAD. As shown in Table 1, family caregivers were primarily female (76.5%), spouses (69.2%), or adult children (20.5%), living in an urban community (88.4%). A slight majority of care recipients were male (53.1%), and the mean age for diagnosis was approximately 56 years of age (M ¼ 56.2; standard deviation ¼ 6.36). The youngest reported diagnosis was 32 years of age. In terms of caregiving responsibilities, 33.4% of participants stated that they were caring for another individual in addition to the individual with EOAD. For instance, 16.7% reported that they were also caring for a child below the age of 18. Others were caring for a parent who was either living with them (2.6%) or living elsewhere (11.5%). Some (11.5%) participants were providing care for other family members (eg, brother and sister) or a close friend. In a few cases, participants reported that they were simultaneously providing care for the individual with EOAD, a child, and an aging parent. Caregivers were asked about the services that they used and the degree to which such services were important. Adult day services was the most commonly used service (26.9%), followed by home health care services (19.5%), skilled nursing care in a long-term care facility (18.0), and nonmedical home services (15.4%). Fewer caregivers reported using transportation services (11.5%), meal services such as Meals-on-Wheels (9.0%), assisted living facilities (7.8%), and short-term emergency respite (3.9%). Interestingly, only 11.5% of family caregivers reported the use of support programs specific to EOAD. It is also important to note that the majority (67.9%) of respondents reported that they did not currently use any type of formal support service. When asked about importance of services, caregivers responded that
Downloaded from aja.sagepub.com at NORTH DAKOTA STATE UNIV LIB on June 29, 2015
American Journal of Alzheimer’s Disease & Other Dementias® 29(7)
598 Table 1. Demographic Characteristics.a Characteristic
%
Gender of caregiver Female Male County where caregiver is located Urban Rural Caregiver relationship to the care recipient Spouse or partner Adult child Other (eg, sibling, parent, friend) Caregiver’s current employment status Employed full time (>32 hours) Employed part time (32 hours) Employed part time (
Exploring the Service and Support Needs of Families With Early-Onset Alzheimer’s Disease
American Journal of Alzheimer’s Disease & Other Dementias® 2014, Vol. 29(7) 596-600 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1533317514558160 aja.sagepub.com
Allison K. Gibson, PhD1, Keith A. Anderson, PhD2, and Sara Acocks, BSc3
Abstract Although often cast as a disease of later life, a growing number of people are being diagnosed with Alzheimer’s disease in their 50s and 60s. Early-onset Alzheimer’s disease (EOAD) poses special challenges and needs for individuals and their caregivers, such as employment and access to services. In this cross-sectional study, the researchers surveyed 81 (N ¼ 81) family caregivers to individuals with EOAD to identify service and support usage and need. Descriptive analyses revealed that families utilized a range of formal services (eg, adult day) and informal support from family and friends. In terms of challenges and needs, participants indicated that they struggled most with employment, benefits, and financial issues. Although most caregivers felt that they were coping well, they also indicated that their needs were not well understood by service providers and the public. These findings highlight the need to better understand and respond to the specific issues surrounding EOAD. Keywords early-onset Alzheimer’s disease, young-onset Alzheimer’s disease, caregiving, support needs
Diagnosed before the age of 65, early-onset Alzheimer’s disease (EOAD) accounts for approximately 5% of all cases of Alzheimer’s disease (AD) in the United States.1 The estimated 200 000 individuals diagnosed with EOAD and their families face specific challenges, given both the devastating impact and the anachronistic timing of the disease. Employment and access to benefits can be a challenge, as many with EOAD still need to work and have yet to reach an age where retirement benefits are available. Others may be raising children or providing care to their own parents. The strain of EOAD can also have a negative impact on family dynamics and relationships as most are ill-prepared to deal with such an unexpected and burdensome disease.2 Although researchers are beginning to cast a light on families faced with EOAD, few have focused on the families’ perspectives on living with EOAD. This leaves service providers with little information on the specific needs of this group and how to develop and direct services. In this study, the researchers explored the services used by families with EOAD, the support that they receive, their needs and unmet needs, and their perceptions of how others understand their experiences with this disease. The findings should help service provides better understand this population and the particular challenges of living with EOAD. Research has clearly shown that living with AD and caring for someone diagnosed with AD can impart immense physical, emotional, and social strains.3,4 Families with EOAD face many of the same challenges as those with AD, including the
physical demands of caregiving, mental health issues (eg, depression and anxiety), and lost opportunities and time for socialization and other activities.5,6 Researchers have found that families dealing with EOAD face additional challenges such as a disruption of their active roles in life, loss of future plans, changes in marital relations, and problems related to work and finances (for a review7). Such challenges are not unexpected, given the life stage in which EOAD is diagnosed. For many, the 50s and 60s are prime years in terms of family life, career, and future orientation toward retirement. Early, accurate, and definitive diagnoses have also been found to be an important need for families, as a lack of diagnosis can preclude individuals from qualifying for services.5,8 The needs of families with EOAD are many, yet services for this population are few. This is primarily a result of their young age, as most services for individuals with dementia and their caregivers are designed for older adults.9-11 Research has found that individuals with EOAD and their caregivers do not feel
1
Department of Social Work, Winthrop University, Rock Hill, SC, USA School of Social Work, University of Montana, Missoula, MT, USA 3 Sunrise on the Scioto—Sunrise Senior Living, Columbus, OH, USA 2
Corresponding Author: Allison K. Gibson, PhD, Department of Social Work, Winthrop University, 701 Oakland Ave., Rock Hill, SC 29732, USA. Email: [email protected]
Downloaded from aja.sagepub.com at NORTH DAKOTA STATE UNIV LIB on June 29, 2015
Gibson et al
597
like they ‘‘fit in’’ with support programs for older adults and are reluctant to utilize such services.12 The Alzheimer’s Association, a leading source of support in the United States, has stated that increasing services to this group is a priority; however, many service providers have yet to develop targeted programs.13 Individuals with EOAD and their caregivers may also have difficulty in finding family members to assist with caregiving. In cases with AD, adult children often assist with caregiving. This may not be the case with EOAD where children are often still young and are not in a position to assist with care.14 In addition to the challenges of accessing support and services, many individuals with EOAD encounter difficulties in qualifying for government programs. Some individuals may not be aware that they have EOAD or may have difficulty in obtaining a definitive diagnosis. This may preclude them from seeking benefits. Others may not meet strict requirements to quality for programs such as social security disability insurance, as the condition may not meet the definition for what constitutes a disability.13 Age again plays a factor in qualifying and accessing other programs, such as adult day services and transportation. Individuals with EOAD and their caregivers seem to be caught in a state of limbo—too young for a health care system designed to help older adults. Although we are beginning to learn more about EOAD, there have been relatively few studies that have addressed the services that families use and the needs that exist for this population. For example, a recent review article identified only 17 published articles that addressed the impact of EOAD on caregivers.7 This speaks to the need for additional research on this often overlooked population. The purpose of this study was to gain the caregiver’s perspective on (1) the services and support that is available and utilized by families with EOAD, (2) the needs and unmet needs of families with EOAD; and (3) the degree to which the challenges and needs of families with EOAD are perceived. The findings from this study are important on several levels. They add to the nascent literature on this topic and may serve as a stepping stone for future studies. The findings also afford valuable information for service providers in terms of program development and meeting the specific needs of this group.
Methods Sample The population for this cross-sectional study consisted of caregivers for individuals with EOAD. The authors collaborated with 5 chapters of the Alzheimer’s Association in the state of Ohio to contact and recruit participants. Each chapter maintains lists of family caregivers to individuals with EOAD. Packets containing a cover letter, a survey, and a stamped return envelope were mailed to each family caregiver on the lists of each chapter. A total of 315 packets were mailed. Of these, 54 were returned as ‘‘undeliverable’’ due to address changes, leaving 261 delivered packets. A total of 81 family caregivers (N ¼ 81) completed surveys, resulting in a response rate of 31%.
Data Collection and Analysis A focus group was held with family caregivers and service providers to help develop items for this survey. Three themes emerged from the focus group—(1) the challenges of providing care, (2) the challenges of accessing services and benefits, and (3) the desire for additional services tailored to meet the needs of caregivers and individuals with EOAD. These themes were reflected in the items included in the survey. The survey instrument contained items focused on the following: demographics, caregiving obligations, utilization of services (formal and informal), perceived importance of services, employment status, need for and access to financial services and benefits, and perceived understanding of the experiences of caregivers by the public and by service providers. Given the fact that burden is well understood in caregiving, the authors did not include a burden scale. The authors also intentionally limited the number of items to increase participation and to decrease time demands. Given the relative simplicity of the survey, data analysis consisted of frequencies and descriptive statistics computed using SYSTAT 13.
Results The final sample consisted of 81 family caregivers (N ¼ 81) to individuals diagnosed with EOAD. As shown in Table 1, family caregivers were primarily female (76.5%), spouses (69.2%), or adult children (20.5%), living in an urban community (88.4%). A slight majority of care recipients were male (53.1%), and the mean age for diagnosis was approximately 56 years of age (M ¼ 56.2; standard deviation ¼ 6.36). The youngest reported diagnosis was 32 years of age. In terms of caregiving responsibilities, 33.4% of participants stated that they were caring for another individual in addition to the individual with EOAD. For instance, 16.7% reported that they were also caring for a child below the age of 18. Others were caring for a parent who was either living with them (2.6%) or living elsewhere (11.5%). Some (11.5%) participants were providing care for other family members (eg, brother and sister) or a close friend. In a few cases, participants reported that they were simultaneously providing care for the individual with EOAD, a child, and an aging parent. Caregivers were asked about the services that they used and the degree to which such services were important. Adult day services was the most commonly used service (26.9%), followed by home health care services (19.5%), skilled nursing care in a long-term care facility (18.0), and nonmedical home services (15.4%). Fewer caregivers reported using transportation services (11.5%), meal services such as Meals-on-Wheels (9.0%), assisted living facilities (7.8%), and short-term emergency respite (3.9%). Interestingly, only 11.5% of family caregivers reported the use of support programs specific to EOAD. It is also important to note that the majority (67.9%) of respondents reported that they did not currently use any type of formal support service. When asked about importance of services, caregivers responded that
Downloaded from aja.sagepub.com at NORTH DAKOTA STATE UNIV LIB on June 29, 2015
American Journal of Alzheimer’s Disease & Other Dementias® 29(7)
598 Table 1. Demographic Characteristics.a Characteristic
%
Gender of caregiver Female Male County where caregiver is located Urban Rural Caregiver relationship to the care recipient Spouse or partner Adult child Other (eg, sibling, parent, friend) Caregiver’s current employment status Employed full time (>32 hours) Employed part time (32 hours) Employed part time (
