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Study Overview
Objective. To examine the effectiveness of a hub site–based care delivery system in delivering a dementia care management program to persons with dementia and their caregivers.
Design. Randomized pragmatic clinical trial enrolling dyads of persons with dementia and their caregiver. Study participants were randomly assigned to the dementia care management program and usual care in a 2:1 ratio.
Setting and participants. The study was conducted from 2 hub sites: the University of California, San Francisco, and the University of Nebraska Medical Center in Omaha. Each hub-site team served persons with dementia and their caregivers in California, Nebraska, and Iowa in both urban and rural areas. Participants were recruited through referral by treating providers or self-referral in response to advertising presented through a community outreach event, in the news, or on the internet. Eligibility requirements included: having a dementia diagnosis made by a treating provider; age older than 45 years; Medicare or Medicaid enrollment or eligibility; presence of a caregiver willing to enroll in the study; fluency in English, Spanish, or Cantonese; and residence in California, Nebraska, or Iowa. Exclusion criteria included residence in a nursing home. Out of 2585 referred dyads of persons with dementia and caregivers, 780 met inclusion criteria and were enrolled. A 2:1 randomization yielded 512 dyads in the intervention group and 268 dyads in the control group.
Intervention. The dementia care management program was implemented through the Care Ecosystem, a telephone- and internet-based supportive care intervention delivered by care team navigators. The navigators were unlicensed but trained dementia care guides working under the supervision of an advanced practice nurse, social worker, and pharmacist. The intervention consisted of telephone calls, monthly or at a frequency determined by needs and preferences, placed by navigators over a 12-month period; the content of the calls included response to immediate needs of persons with dementia and their caregiver, screening for common problems, and provision of support and education using care plan protocols. Caregivers and persons with dementia were encouraged to initiate contact through email, mail, or telephone for dementia-related questions. Additional support was provided by an advanced practice nurse, social worker, or pharmacist, as needed, and these health care professionals conducted further communication with the persons with dementia, caregiver, or outside professionals, such as physicians, for the persons with dementia, as needed. The average number of telephone calls over the 12-month period was 15.3 (standard deviation, 11.3). Participants assigned to usual care were offered contact information on dementia and aging-related organizations, including the Alzheimer’s Association and the Area Agencies on Aging, and also were sent a quarterly newsletter with general information about dementia.
Main outcome measures. The primary outcome measure was the Quality of Life in Alzheimer’s Disease score obtained by caregiver interview. This quality of life measure includes the following aspects, each rated on an ordinal scale of 1 to 4: physical health, energy level, mood, living situation, memory, family, closest relationship, friends, self, ability to do things for fun, finances, and life as a whole. The scores range from 13 to 52, with a higher score indicating better quality of life for persons with dementia. Other outcomes included frequency of emergency room visits, hospital use, and ambulance use; caregiver depression score from the Patient Health Questionnaire scale; caregiver burden score using the 12-item Zarit Burden Interview; caregiver self-efficacy; and caregiver satisfaction.
Main results. The study found that the quality of life for persons with dementia declined more in the usual care group than in the intervention group during the 12-month study period (difference of 0.53; 95% confidence interval, 0.25-1.3; P = 0.04). Persons with dementia also had fewer emergency room visits, with a number needed to treat to prevent 1 emergency room visit of 5. The intervention did not reduce ambulance use or hospital use. Caregivers in the intervention group had a greater decline in depression when compared to usual care; the frequency of moderate to severe depression decreased from 13.4% at baseline to 7.9% at 12 months (P = 0.004). Caregiver burden declined more in the intervention group than in the control group at 12 months (P = 0.046). In terms of caregiver satisfaction, 97% of caregivers surveyed in the intervention group said they would recommend the intervention to another caregiver; 45% indicated they were very satisfied, and 33% that they were satisfied.
Conclusion. Delivering dementia care via telephone and internet through a collaborative program with care navigators can improve caregiver burden and well-being and improve quality of life, emergency room utilization, and depression for persons with dementia. In addition, the program was well received.
Commentary
Dementia, including Alzheimer’s disease, primarily affects older adults and is characterized by declines in memory and cognitive function. It is often accompanied by neuropsychological symptoms such as agitation, wandering, and physical and verbal outbursts, which are debilitating for persons living with dementia and difficult to cope with for caregivers.1 These symptoms are often the source of caregiver stress, potentially leading to caregiver depression and eventual need for long-term institution-based care, such as nursing home placement.2
Prior literature has established the potential effect of support in improving caregiver outcomes, including caregiver stress and burden, through interventions such as enhancing resources for caregivers, teaching coping strategies to caregivers, and teaching caregivers how to manage support for their loved ones.3,4 However, wider adoption of these interventions may be limited if the interventions involve in-person meetings or activities that take caregivers away from caregiving; the scalability of these programs is also limited by their ability to reach persons with dementia and their caregivers. These barriers are particularly important for older adults living in rural areas, where the availability of resources and distance from access to quality care may be particularly limiting.5 Leveraging advances in technology and telecommunication, this study examined the effects of providing dementia care support via telephone and internet using a trained, unlicensed care navigator as the main point of contact. The results showed improved quality of life for persons with dementia, reduced need for emergency room visits, and reduced caregiver burden and depression. The intervention is promising as a scalable intervention that may impact dementia care nationwide.
Despite the promising results, there are several issues regarding the intervention’s applicability and impact that future studies may help to further clarify. Although the improvement in quality of life in persons with dementia is important to document, it is unclear whether this difference is clinically significant. Also, it may be important to examine whether the 12-month program has sustained impact beyond the study period, although the intervention could be conceived as a long-term care solution. If the intervention is sustained beyond 12 months, future studies may look at other clinical outcomes, such as incidence of institutionalization and perhaps time to institutionalization. The study population consisted of persons with dementia of various stages, half of whom had mild disease. Future studies may further clarify at which stage of dementia the intervention is most useful. Other changes that occurred during the study period, such as change in the use of paid home-based support services and referrals to other relevant evaluations and treatment, may provide further clues about how the dementia care intervention achieved its beneficial effects.
Applications for Clinical Practice
From the health systems perspective, dementia care accounts for significant resources, and these costs are expected to grow as the population ages and dementia prevalence increases. Identifying potentially scalable interventions that yield clinical benefits and are sustainable from a cost perspective is an important step forward in improving care for persons with dementia and their caregivers across the nation. The use of centralized hubs to deliver this intervention and the novel use of telecommunications advances make this intervention applicable across large areas. Policy makers should explore how an intervention such as this could be established and sustained in our health care system.
–William W. Hung, MD, MPH
1. Mega MS, Cummings JL, Fiorello T, Gornbein J. The spectrum of behavioral changes in Alzheimer’s disease. Neurology. 1996;46:130-135.
2. Gallagher-Thompson D, Brooks JO 3rd, Bliwise D, et al. The relations among caregiver stress, “sundowning” symptoms, and cognitive decline in Alzheimer’s disease. J Am Geriatr Soc. 1992;40:807-810.
3. Livingston G, Barber J, Rapaport P, et al. Clinical effectiveness of a manual based coping strategy programme (START, STrAtegies for RelaTives) in promoting the mental health of carers of family members with dementia: pragmatic randomised controlled trial. BMJ. 2013;347:f6276.
4. Belle SH, Burgio L, Burns R, et al; Resources for Enhancing Alzheimer’s Caregiver Health (REACH) II Investigators. Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: a randomized, controlled trial. Ann Intern Med. 2006;145:727-738.
5. Goins RT, Williams KA, Carter MW, et al. Perceived barriers to health care access among rural older adults: a qualitative study. J Rural Health. 2005;21:206-213.
Study Overview
Objective. To examine the effectiveness of a hub site–based care delivery system in delivering a dementia care management program to persons with dementia and their caregivers.
Design. Randomized pragmatic clinical trial enrolling dyads of persons with dementia and their caregiver. Study participants were randomly assigned to the dementia care management program and usual care in a 2:1 ratio.
Setting and participants. The study was conducted from 2 hub sites: the University of California, San Francisco, and the University of Nebraska Medical Center in Omaha. Each hub-site team served persons with dementia and their caregivers in California, Nebraska, and Iowa in both urban and rural areas. Participants were recruited through referral by treating providers or self-referral in response to advertising presented through a community outreach event, in the news, or on the internet. Eligibility requirements included: having a dementia diagnosis made by a treating provider; age older than 45 years; Medicare or Medicaid enrollment or eligibility; presence of a caregiver willing to enroll in the study; fluency in English, Spanish, or Cantonese; and residence in California, Nebraska, or Iowa. Exclusion criteria included residence in a nursing home. Out of 2585 referred dyads of persons with dementia and caregivers, 780 met inclusion criteria and were enrolled. A 2:1 randomization yielded 512 dyads in the intervention group and 268 dyads in the control group.
Intervention. The dementia care management program was implemented through the Care Ecosystem, a telephone- and internet-based supportive care intervention delivered by care team navigators. The navigators were unlicensed but trained dementia care guides working under the supervision of an advanced practice nurse, social worker, and pharmacist. The intervention consisted of telephone calls, monthly or at a frequency determined by needs and preferences, placed by navigators over a 12-month period; the content of the calls included response to immediate needs of persons with dementia and their caregiver, screening for common problems, and provision of support and education using care plan protocols. Caregivers and persons with dementia were encouraged to initiate contact through email, mail, or telephone for dementia-related questions. Additional support was provided by an advanced practice nurse, social worker, or pharmacist, as needed, and these health care professionals conducted further communication with the persons with dementia, caregiver, or outside professionals, such as physicians, for the persons with dementia, as needed. The average number of telephone calls over the 12-month period was 15.3 (standard deviation, 11.3). Participants assigned to usual care were offered contact information on dementia and aging-related organizations, including the Alzheimer’s Association and the Area Agencies on Aging, and also were sent a quarterly newsletter with general information about dementia.
Main outcome measures. The primary outcome measure was the Quality of Life in Alzheimer’s Disease score obtained by caregiver interview. This quality of life measure includes the following aspects, each rated on an ordinal scale of 1 to 4: physical health, energy level, mood, living situation, memory, family, closest relationship, friends, self, ability to do things for fun, finances, and life as a whole. The scores range from 13 to 52, with a higher score indicating better quality of life for persons with dementia. Other outcomes included frequency of emergency room visits, hospital use, and ambulance use; caregiver depression score from the Patient Health Questionnaire scale; caregiver burden score using the 12-item Zarit Burden Interview; caregiver self-efficacy; and caregiver satisfaction.
Main results. The study found that the quality of life for persons with dementia declined more in the usual care group than in the intervention group during the 12-month study period (difference of 0.53; 95% confidence interval, 0.25-1.3; P = 0.04). Persons with dementia also had fewer emergency room visits, with a number needed to treat to prevent 1 emergency room visit of 5. The intervention did not reduce ambulance use or hospital use. Caregivers in the intervention group had a greater decline in depression when compared to usual care; the frequency of moderate to severe depression decreased from 13.4% at baseline to 7.9% at 12 months (P = 0.004). Caregiver burden declined more in the intervention group than in the control group at 12 months (P = 0.046). In terms of caregiver satisfaction, 97% of caregivers surveyed in the intervention group said they would recommend the intervention to another caregiver; 45% indicated they were very satisfied, and 33% that they were satisfied.
Conclusion. Delivering dementia care via telephone and internet through a collaborative program with care navigators can improve caregiver burden and well-being and improve quality of life, emergency room utilization, and depression for persons with dementia. In addition, the program was well received.
Commentary
Dementia, including Alzheimer’s disease, primarily affects older adults and is characterized by declines in memory and cognitive function. It is often accompanied by neuropsychological symptoms such as agitation, wandering, and physical and verbal outbursts, which are debilitating for persons living with dementia and difficult to cope with for caregivers.1 These symptoms are often the source of caregiver stress, potentially leading to caregiver depression and eventual need for long-term institution-based care, such as nursing home placement.2
Prior literature has established the potential effect of support in improving caregiver outcomes, including caregiver stress and burden, through interventions such as enhancing resources for caregivers, teaching coping strategies to caregivers, and teaching caregivers how to manage support for their loved ones.3,4 However, wider adoption of these interventions may be limited if the interventions involve in-person meetings or activities that take caregivers away from caregiving; the scalability of these programs is also limited by their ability to reach persons with dementia and their caregivers. These barriers are particularly important for older adults living in rural areas, where the availability of resources and distance from access to quality care may be particularly limiting.5 Leveraging advances in technology and telecommunication, this study examined the effects of providing dementia care support via telephone and internet using a trained, unlicensed care navigator as the main point of contact. The results showed improved quality of life for persons with dementia, reduced need for emergency room visits, and reduced caregiver burden and depression. The intervention is promising as a scalable intervention that may impact dementia care nationwide.
Despite the promising results, there are several issues regarding the intervention’s applicability and impact that future studies may help to further clarify. Although the improvement in quality of life in persons with dementia is important to document, it is unclear whether this difference is clinically significant. Also, it may be important to examine whether the 12-month program has sustained impact beyond the study period, although the intervention could be conceived as a long-term care solution. If the intervention is sustained beyond 12 months, future studies may look at other clinical outcomes, such as incidence of institutionalization and perhaps time to institutionalization. The study population consisted of persons with dementia of various stages, half of whom had mild disease. Future studies may further clarify at which stage of dementia the intervention is most useful. Other changes that occurred during the study period, such as change in the use of paid home-based support services and referrals to other relevant evaluations and treatment, may provide further clues about how the dementia care intervention achieved its beneficial effects.
Applications for Clinical Practice
From the health systems perspective, dementia care accounts for significant resources, and these costs are expected to grow as the population ages and dementia prevalence increases. Identifying potentially scalable interventions that yield clinical benefits and are sustainable from a cost perspective is an important step forward in improving care for persons with dementia and their caregivers across the nation. The use of centralized hubs to deliver this intervention and the novel use of telecommunications advances make this intervention applicable across large areas. Policy makers should explore how an intervention such as this could be established and sustained in our health care system.
–William W. Hung, MD, MPH
Study Overview
Objective. To examine the effectiveness of a hub site–based care delivery system in delivering a dementia care management program to persons with dementia and their caregivers.
Design. Randomized pragmatic clinical trial enrolling dyads of persons with dementia and their caregiver. Study participants were randomly assigned to the dementia care management program and usual care in a 2:1 ratio.
Setting and participants. The study was conducted from 2 hub sites: the University of California, San Francisco, and the University of Nebraska Medical Center in Omaha. Each hub-site team served persons with dementia and their caregivers in California, Nebraska, and Iowa in both urban and rural areas. Participants were recruited through referral by treating providers or self-referral in response to advertising presented through a community outreach event, in the news, or on the internet. Eligibility requirements included: having a dementia diagnosis made by a treating provider; age older than 45 years; Medicare or Medicaid enrollment or eligibility; presence of a caregiver willing to enroll in the study; fluency in English, Spanish, or Cantonese; and residence in California, Nebraska, or Iowa. Exclusion criteria included residence in a nursing home. Out of 2585 referred dyads of persons with dementia and caregivers, 780 met inclusion criteria and were enrolled. A 2:1 randomization yielded 512 dyads in the intervention group and 268 dyads in the control group.
Intervention. The dementia care management program was implemented through the Care Ecosystem, a telephone- and internet-based supportive care intervention delivered by care team navigators. The navigators were unlicensed but trained dementia care guides working under the supervision of an advanced practice nurse, social worker, and pharmacist. The intervention consisted of telephone calls, monthly or at a frequency determined by needs and preferences, placed by navigators over a 12-month period; the content of the calls included response to immediate needs of persons with dementia and their caregiver, screening for common problems, and provision of support and education using care plan protocols. Caregivers and persons with dementia were encouraged to initiate contact through email, mail, or telephone for dementia-related questions. Additional support was provided by an advanced practice nurse, social worker, or pharmacist, as needed, and these health care professionals conducted further communication with the persons with dementia, caregiver, or outside professionals, such as physicians, for the persons with dementia, as needed. The average number of telephone calls over the 12-month period was 15.3 (standard deviation, 11.3). Participants assigned to usual care were offered contact information on dementia and aging-related organizations, including the Alzheimer’s Association and the Area Agencies on Aging, and also were sent a quarterly newsletter with general information about dementia.
Main outcome measures. The primary outcome measure was the Quality of Life in Alzheimer’s Disease score obtained by caregiver interview. This quality of life measure includes the following aspects, each rated on an ordinal scale of 1 to 4: physical health, energy level, mood, living situation, memory, family, closest relationship, friends, self, ability to do things for fun, finances, and life as a whole. The scores range from 13 to 52, with a higher score indicating better quality of life for persons with dementia. Other outcomes included frequency of emergency room visits, hospital use, and ambulance use; caregiver depression score from the Patient Health Questionnaire scale; caregiver burden score using the 12-item Zarit Burden Interview; caregiver self-efficacy; and caregiver satisfaction.
Main results. The study found that the quality of life for persons with dementia declined more in the usual care group than in the intervention group during the 12-month study period (difference of 0.53; 95% confidence interval, 0.25-1.3; P = 0.04). Persons with dementia also had fewer emergency room visits, with a number needed to treat to prevent 1 emergency room visit of 5. The intervention did not reduce ambulance use or hospital use. Caregivers in the intervention group had a greater decline in depression when compared to usual care; the frequency of moderate to severe depression decreased from 13.4% at baseline to 7.9% at 12 months (P = 0.004). Caregiver burden declined more in the intervention group than in the control group at 12 months (P = 0.046). In terms of caregiver satisfaction, 97% of caregivers surveyed in the intervention group said they would recommend the intervention to another caregiver; 45% indicated they were very satisfied, and 33% that they were satisfied.
Conclusion. Delivering dementia care via telephone and internet through a collaborative program with care navigators can improve caregiver burden and well-being and improve quality of life, emergency room utilization, and depression for persons with dementia. In addition, the program was well received.
Commentary
Dementia, including Alzheimer’s disease, primarily affects older adults and is characterized by declines in memory and cognitive function. It is often accompanied by neuropsychological symptoms such as agitation, wandering, and physical and verbal outbursts, which are debilitating for persons living with dementia and difficult to cope with for caregivers.1 These symptoms are often the source of caregiver stress, potentially leading to caregiver depression and eventual need for long-term institution-based care, such as nursing home placement.2
Prior literature has established the potential effect of support in improving caregiver outcomes, including caregiver stress and burden, through interventions such as enhancing resources for caregivers, teaching coping strategies to caregivers, and teaching caregivers how to manage support for their loved ones.3,4 However, wider adoption of these interventions may be limited if the interventions involve in-person meetings or activities that take caregivers away from caregiving; the scalability of these programs is also limited by their ability to reach persons with dementia and their caregivers. These barriers are particularly important for older adults living in rural areas, where the availability of resources and distance from access to quality care may be particularly limiting.5 Leveraging advances in technology and telecommunication, this study examined the effects of providing dementia care support via telephone and internet using a trained, unlicensed care navigator as the main point of contact. The results showed improved quality of life for persons with dementia, reduced need for emergency room visits, and reduced caregiver burden and depression. The intervention is promising as a scalable intervention that may impact dementia care nationwide.
Despite the promising results, there are several issues regarding the intervention’s applicability and impact that future studies may help to further clarify. Although the improvement in quality of life in persons with dementia is important to document, it is unclear whether this difference is clinically significant. Also, it may be important to examine whether the 12-month program has sustained impact beyond the study period, although the intervention could be conceived as a long-term care solution. If the intervention is sustained beyond 12 months, future studies may look at other clinical outcomes, such as incidence of institutionalization and perhaps time to institutionalization. The study population consisted of persons with dementia of various stages, half of whom had mild disease. Future studies may further clarify at which stage of dementia the intervention is most useful. Other changes that occurred during the study period, such as change in the use of paid home-based support services and referrals to other relevant evaluations and treatment, may provide further clues about how the dementia care intervention achieved its beneficial effects.
Applications for Clinical Practice
From the health systems perspective, dementia care accounts for significant resources, and these costs are expected to grow as the population ages and dementia prevalence increases. Identifying potentially scalable interventions that yield clinical benefits and are sustainable from a cost perspective is an important step forward in improving care for persons with dementia and their caregivers across the nation. The use of centralized hubs to deliver this intervention and the novel use of telecommunications advances make this intervention applicable across large areas. Policy makers should explore how an intervention such as this could be established and sustained in our health care system.
–William W. Hung, MD, MPH
1. Mega MS, Cummings JL, Fiorello T, Gornbein J. The spectrum of behavioral changes in Alzheimer’s disease. Neurology. 1996;46:130-135.
2. Gallagher-Thompson D, Brooks JO 3rd, Bliwise D, et al. The relations among caregiver stress, “sundowning” symptoms, and cognitive decline in Alzheimer’s disease. J Am Geriatr Soc. 1992;40:807-810.
3. Livingston G, Barber J, Rapaport P, et al. Clinical effectiveness of a manual based coping strategy programme (START, STrAtegies for RelaTives) in promoting the mental health of carers of family members with dementia: pragmatic randomised controlled trial. BMJ. 2013;347:f6276.
4. Belle SH, Burgio L, Burns R, et al; Resources for Enhancing Alzheimer’s Caregiver Health (REACH) II Investigators. Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: a randomized, controlled trial. Ann Intern Med. 2006;145:727-738.
5. Goins RT, Williams KA, Carter MW, et al. Perceived barriers to health care access among rural older adults: a qualitative study. J Rural Health. 2005;21:206-213.
1. Mega MS, Cummings JL, Fiorello T, Gornbein J. The spectrum of behavioral changes in Alzheimer’s disease. Neurology. 1996;46:130-135.
2. Gallagher-Thompson D, Brooks JO 3rd, Bliwise D, et al. The relations among caregiver stress, “sundowning” symptoms, and cognitive decline in Alzheimer’s disease. J Am Geriatr Soc. 1992;40:807-810.
3. Livingston G, Barber J, Rapaport P, et al. Clinical effectiveness of a manual based coping strategy programme (START, STrAtegies for RelaTives) in promoting the mental health of carers of family members with dementia: pragmatic randomised controlled trial. BMJ. 2013;347:f6276.
4. Belle SH, Burgio L, Burns R, et al; Resources for Enhancing Alzheimer’s Caregiver Health (REACH) II Investigators. Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: a randomized, controlled trial. Ann Intern Med. 2006;145:727-738.
5. Goins RT, Williams KA, Carter MW, et al. Perceived barriers to health care access among rural older adults: a qualitative study. J Rural Health. 2005;21:206-213.