“When we are no longer able to change a situation… we are challenged to change ourselves.” Viktor Frankl, Man’s Search for Meaning.
The nature of caregiving, and why we need caregiver needs assessment
“Caregiving and receiving is a gift-sharing process in which we give and receive attention, affirmation, practical assistance, emotional support, moral solidarity, and abiding meaning that is complicated and incomplete. Care is the human glue that holds together families, communities, and societies” (Kleinman, Reference Kleinman2020).
Caring for a person living with dementia changes expectations, brings deeply personal emotional, cognitive, physical, and moral challenges, uncovers unsuspected inner strengths, and prompts the growth of new ones. We now understand how unrelieved caregiving stress harms the health and well-being of the dyad, but also how accepting the responsibility of caregiving can strengthen purpose, stimulate growth, and cultivate wisdom (Roth et al., Reference Roth, Fredman and Haley2015).
Decades of research have revealed the many ways dementia gradually diminishes autonomy, self-regulation, and agency, and transfers these functions, on behalf of the affected individual, to family, friends, neighborhoods, communities, clinicians, and healthcare systems. Today’s unprecedented need for skillful, long-term dementia caregiving is a consequence of the dramatic extension of lifespan worldwide that spurred dramatic expansion of the population of older people made dependent through cognitive decline and disability (Prince et al., Reference Prince2012; Wimo et al., Reference Wimo, Gauthier and Prince2018). Families remain the main providers of this care, in roles that have become quasi-professionalized as health care becomes more complex. We now understand the impact on caregiving of shrinking family size, geographic mobility, changes in employment – especially for women – and of the broad restructuring of social and economic life that is taking place across the world. Supplementing family-based care at pivotal points along the dementia life course is now a function carried out, with varying success, by community-based voluntary and paid service organizations, health and long-term care providers, and government-funded aging care agencies. These diverse organizations, work in a more or (often) less coordinated way to sustain the well-being of individuals living with dementia and their care partners.
Caregivers’ lived experience: establishing the relevance of needs assessment
Understanding the caregiving experience is the foundation of designing services that nurture caregivers’ latent strengths, and that can strengthen and repair their social safety nets. The methods of social science and mental health – ethnography, semi-structured interviews, and surveys – reveal broad commonalities in caregiving experience based on the primary effects of dementing diseases on cognition, behavior, everyday functioning, and relationships with other people and the surrounding environment. Though these processes are much the same around the world, their primary effects are moderated by many individual differences among patients and caregivers, the nature of the specific diagnosis and stage, effects of (and on) concurrent illnesses, and the relational, social, cultural, institutional, economic, and political ecosystems in which a dementia care dyad is embedded. Tools that assess a broad range of caregiver needs are the vehicle for translating this extensive body of knowledge into practical design and planning for services that will effectively sustain caregivers. DeCANT, a caregiver needs assessment tool developed by Clemmensen et al. (Reference Clemmensen, Kristensen, Andersen-Ranberg and Lauridsen2021) and published here online in September, catalogues a range of caregiver-reported needs, supported by a scoring structure that distinguishes unmet needs, and their urgency, from those that are already met or don’t apply.
Defining caregiver needs: balancing subjectivity
The primacy of caregiver perception in defining needs, though widely accepted in the field of caregiver assessment, deserves thoughtful consideration. Perceived needs cannot be the sole basis for determining what services ought to be provided and who should be eligible to receive them, with what priority, and in what “dose” or intensity. In practice, many factors count: whether a suitable program exists that demonstrably meets the target needs, barriers to use (supply, cost, accessibility), and expert input and judgment. In both health and social care, we need evidence that reveals what unmet needs cause harm, what services mitigate it, and who is accountable for the outcome of those services (Marosszeky et al., Reference Marosszeky, Rix and Owen2006). Evidence about unmet needs that are clearly associated with poor outcomes for individuals with dementia (e.g. elder abuse, preventable hospitalizations, medication toxicity, poorly controlled comorbid conditions, psychosis with aggression) or their caregivers (e.g. impoverishment, depression, burnout, deteriorating health, premature death) offers a useful counterweight to subjective caregiver self-assessment and helps to define the operating terms for service development and deployment. Collaboration between caregivers and experienced providers of relevant care and services can help achieve the necessary balance.
Cross-sector collaboration in developing caregiver needs assessment tools
Two examples of tools developed through explicit collaboration between dementia care professionals and caregivers are DeCANT (Clemmensen et al., Reference Clemmensen, Kristensen, Andersen-Ranberg and Lauridsen2021) and Managing Your Loved One’s Health (MYLOH) (Sadak et al., Reference Sadak, Wright and Borson2018). Both contain care recipient- and caregiver self-facing elements, two essential features identified by qualitative studies of caregiver needs (McCabe et al., Reference McCabe, You and Tatangelo2016). DeCANT’s 25 items cover a wide range of individual perceived needs, from coping with caregivers’ emotional responses, managing behavioral changes, and navigating financial and bureaucratic challenges, to engaging others as helpers, getting more sleep, finding help with housework, and maintaining a positive relationship with the care recipient. Its item content suggests that DeCANT may be most useful for assessing needs in nonmedical service settings that act to link individual caregivers to specific service providers “on the ground.” With further development, DeCANT should be useful in evaluating program outcomes. Psychometric testing is planned.
MYLOH was developed to assess the needs of caregivers specifically in the context of health care for people living with dementia. As indispensable members of a health care “triad” that binds them in partnership with patients and clinicians (Fortinsky, Reference Fortinsky2001), caregivers’ quasi-clinical roles, though often quite demanding (Riffin et al., Reference Riffin, Van Ness, Wolff and Fried2019), are not well represented in established caregiver assessment tools (Family Caregiver Alliance, 2012). The initial version of the tool, Partnering for Better Health – Living with Chronic Illness (PBH-LCI) (Sadak et al., Reference Sadak, Korpak and Borson2015) was created in a multistep collaborative process with a diverse group of 16 dementia care professionals (primary care clinicians, geriatricians, geriatric psychiatrists, nurse practitioners, social workers, community-based service providers) and experienced caregivers. The process followed a systematic approach to developing participant-reported outcome measures (PROMs). Its psychometric properties were found to be superior to a number of other caregiver needs assessments in a recent systematic review (Kipfer and Pihet, Reference Kipfer and Pihet2020). PBH-LCI, and MYLOH, its slightly briefer revision renamed after further testing and cultural tailoring with African-American and Latinx caregivers (Sadak et al., Reference Sadak, Wright and Borson2018), were conceptualized as a way to assess, and ultimately enhance, caregiver “activation” for health care of people with dementia (Sadak et al., Reference Sadak, Souza and Borson2016). Its items identify caregivers’ perceived knowledge and skills in essential domains of care grouped into seven factors, allowing for scoring elements for which the caregiver is not personally responsible. Domains encompass management of cognitive impairment, behavior, everyday functional deficits, medical conditions, and medications; recognizing and knowing how to deal with changes in the care recipient’s health; communicating and working with clinicians; advocating for the care recipient and making healthcare decisions; and maintaining caregiver well-being through self-care and getting help from others. Low caregiver agreement with an item reflecting knowledge or skill indexes unmet need for coaching and/or support by a clinician or other designated provider. MYLOH is structured to frame conversations and collaboration between caregivers and clinicians on behalf of individual patients; its items and domains have been found to be relevant to caregiving across a range of chronic diseases as well as dementia (Borson et al., Reference Borson, Mobley, Fernstrom, Bingham, Sadak and Britt2018). More work remains to be done to define the optimal format for deploying MYLOH in practice and test its responsiveness to change with targeted caregiver interventions.
Harmonizing caregiver needs assessment across service settings, countries, and cultures
Differences between the two tools described here illustrate the influence of the culture in which measures are developed on what and how they ask caregivers to report. The professional disciplines of their authors, the service setting for which a tool is intended, and the national approach to the organization of services all affect the choice of content and method of assessment, despite the broad commonalities of caregiver needs around the world.
A unifying approach would help harmonize assessments across service sector divides, promote more effective integration of international and multidisciplinary perspectives, and simplify the coordination of care and support services across health and community care regardless of where in the world that care is needed.
One approach could be to use a two-stage assessment process similar to that used in the epidemiological study of complex conditions. For caregiver needs, it could begin with a simple screener for unmet needs. The Dementia Services Mini-Screen (Borson et al., Reference Borson, Scanlan, Sadak, Lessig and Vitaliano2014) is a basic first-stage screener that can be completed in under 5 minutes: caregivers report whether they needed dementia-related medical and/or social services in the past year and whether they had used them, answer a single-item caregiver stress question, and complete a brief patient behavior problem checklist. In this initial study, empirically derived thresholds for stress and behavior problems predicted unmet needs in both health and social care sectors. The second stage to follow a positive screen would then be a more detailed assessment to identify the specific types of service most relevant to the individual dyad.
In many countries, health and social care sectors are divided by strong institutional boundaries, reinforced by different policy agendas and separate, uncoordinated funding streams. These gaps are particularly difficult to bridge in countries that, like the USA, embrace an ethos of self-reliance rather than communalism, have large, highly diverse populations distributed over enormous geographic territory, lack national health and social care systems, and vary widely in regional investment in public health. In smaller and more socially cohesive countries like Denmark, public responsibility for the social safety net for older adults is assumed. Despite their important differences, all developed countries struggle to some degree with how to reconcile social responsibility for compassionate help for the vulnerable with the common realities of budget constraints, maldistribution of needed services, and excessive family burden. The gaps are most obvious where care is viewed as mainly a private responsibility, and this may influence caregivers’ expectations, what they define and identify as needs, and whether and to whom they are willing to reveal the needs they have. Moreover, when needs are assessed with measures developed in languages or cultures other than that of a given target group, simple language translation cannot be assumed to yield a comparable understanding of or responses to the items they contain. Cross-national, cross-cultural collaboration would make an international approach to universalizing assessment feasible and create possibilities for new transnational learning.
Ultimately, harmonizing caregiver needs assessment starts with a focus on the basic aims of care and support for people with dementia and their caregivers. The recent release of a major international workgroup report on the current state of dementia prevention and care (Livingston et al., Reference Livingston2020) acknowledges that well-being – emotional, physical, and social, for both people living with dementia and their caregivers – is the goal of much of care today, and that both health and social care attentive to the needs of the dyad are fundamental to achieving that goal. Asking caregivers what they need lays the necessary foundation (Bangerter et al., Reference Bangerter, Griffin, Zarit and Havyer2019), but it is not sufficient. To become dementia-capable, societies must choose to invest more creatively in policies and practices that address those needs (Fazio et al., Reference Fazio, Pace, Maslow, Zimmerman and Kallmyer2018), despite the constraints inherent in their political, economic, philosophical, and care delivery systems, and invite caregivers to help evaluate how successful we are. Perhaps we can look forward to a time when fewer caregivers are overwhelmed, depressed, exhausted, isolated, lonely, and conflicted, feel they can trust what we have to offer, and don’t wait too long before getting help: when what caregivers can expect to receive is what they need to foster mastery, sustain a sense of purpose, and nurture the wisdom that grows from doing well the thing you fear you cannot do.
“When we are no longer able to change a situation… we are challenged to change ourselves.” Viktor Frankl, Man’s Search for Meaning.
The nature of caregiving, and why we need caregiver needs assessment
“Caregiving and receiving is a gift-sharing process in which we give and receive attention, affirmation, practical assistance, emotional support, moral solidarity, and abiding meaning that is complicated and incomplete. Care is the human glue that holds together families, communities, and societies” (Kleinman, Reference Kleinman2020).
Caring for a person living with dementia changes expectations, brings deeply personal emotional, cognitive, physical, and moral challenges, uncovers unsuspected inner strengths, and prompts the growth of new ones. We now understand how unrelieved caregiving stress harms the health and well-being of the dyad, but also how accepting the responsibility of caregiving can strengthen purpose, stimulate growth, and cultivate wisdom (Roth et al., Reference Roth, Fredman and Haley2015).
Decades of research have revealed the many ways dementia gradually diminishes autonomy, self-regulation, and agency, and transfers these functions, on behalf of the affected individual, to family, friends, neighborhoods, communities, clinicians, and healthcare systems. Today’s unprecedented need for skillful, long-term dementia caregiving is a consequence of the dramatic extension of lifespan worldwide that spurred dramatic expansion of the population of older people made dependent through cognitive decline and disability (Prince et al., Reference Prince2012; Wimo et al., Reference Wimo, Gauthier and Prince2018). Families remain the main providers of this care, in roles that have become quasi-professionalized as health care becomes more complex. We now understand the impact on caregiving of shrinking family size, geographic mobility, changes in employment – especially for women – and of the broad restructuring of social and economic life that is taking place across the world. Supplementing family-based care at pivotal points along the dementia life course is now a function carried out, with varying success, by community-based voluntary and paid service organizations, health and long-term care providers, and government-funded aging care agencies. These diverse organizations, work in a more or (often) less coordinated way to sustain the well-being of individuals living with dementia and their care partners.
Caregivers’ lived experience: establishing the relevance of needs assessment
Understanding the caregiving experience is the foundation of designing services that nurture caregivers’ latent strengths, and that can strengthen and repair their social safety nets. The methods of social science and mental health – ethnography, semi-structured interviews, and surveys – reveal broad commonalities in caregiving experience based on the primary effects of dementing diseases on cognition, behavior, everyday functioning, and relationships with other people and the surrounding environment. Though these processes are much the same around the world, their primary effects are moderated by many individual differences among patients and caregivers, the nature of the specific diagnosis and stage, effects of (and on) concurrent illnesses, and the relational, social, cultural, institutional, economic, and political ecosystems in which a dementia care dyad is embedded. Tools that assess a broad range of caregiver needs are the vehicle for translating this extensive body of knowledge into practical design and planning for services that will effectively sustain caregivers. DeCANT, a caregiver needs assessment tool developed by Clemmensen et al. (Reference Clemmensen, Kristensen, Andersen-Ranberg and Lauridsen2021) and published here online in September, catalogues a range of caregiver-reported needs, supported by a scoring structure that distinguishes unmet needs, and their urgency, from those that are already met or don’t apply.
Defining caregiver needs: balancing subjectivity
The primacy of caregiver perception in defining needs, though widely accepted in the field of caregiver assessment, deserves thoughtful consideration. Perceived needs cannot be the sole basis for determining what services ought to be provided and who should be eligible to receive them, with what priority, and in what “dose” or intensity. In practice, many factors count: whether a suitable program exists that demonstrably meets the target needs, barriers to use (supply, cost, accessibility), and expert input and judgment. In both health and social care, we need evidence that reveals what unmet needs cause harm, what services mitigate it, and who is accountable for the outcome of those services (Marosszeky et al., Reference Marosszeky, Rix and Owen2006). Evidence about unmet needs that are clearly associated with poor outcomes for individuals with dementia (e.g. elder abuse, preventable hospitalizations, medication toxicity, poorly controlled comorbid conditions, psychosis with aggression) or their caregivers (e.g. impoverishment, depression, burnout, deteriorating health, premature death) offers a useful counterweight to subjective caregiver self-assessment and helps to define the operating terms for service development and deployment. Collaboration between caregivers and experienced providers of relevant care and services can help achieve the necessary balance.
Cross-sector collaboration in developing caregiver needs assessment tools
Two examples of tools developed through explicit collaboration between dementia care professionals and caregivers are DeCANT (Clemmensen et al., Reference Clemmensen, Kristensen, Andersen-Ranberg and Lauridsen2021) and Managing Your Loved One’s Health (MYLOH) (Sadak et al., Reference Sadak, Wright and Borson2018). Both contain care recipient- and caregiver self-facing elements, two essential features identified by qualitative studies of caregiver needs (McCabe et al., Reference McCabe, You and Tatangelo2016). DeCANT’s 25 items cover a wide range of individual perceived needs, from coping with caregivers’ emotional responses, managing behavioral changes, and navigating financial and bureaucratic challenges, to engaging others as helpers, getting more sleep, finding help with housework, and maintaining a positive relationship with the care recipient. Its item content suggests that DeCANT may be most useful for assessing needs in nonmedical service settings that act to link individual caregivers to specific service providers “on the ground.” With further development, DeCANT should be useful in evaluating program outcomes. Psychometric testing is planned.
MYLOH was developed to assess the needs of caregivers specifically in the context of health care for people living with dementia. As indispensable members of a health care “triad” that binds them in partnership with patients and clinicians (Fortinsky, Reference Fortinsky2001), caregivers’ quasi-clinical roles, though often quite demanding (Riffin et al., Reference Riffin, Van Ness, Wolff and Fried2019), are not well represented in established caregiver assessment tools (Family Caregiver Alliance, 2012). The initial version of the tool, Partnering for Better Health – Living with Chronic Illness (PBH-LCI) (Sadak et al., Reference Sadak, Korpak and Borson2015) was created in a multistep collaborative process with a diverse group of 16 dementia care professionals (primary care clinicians, geriatricians, geriatric psychiatrists, nurse practitioners, social workers, community-based service providers) and experienced caregivers. The process followed a systematic approach to developing participant-reported outcome measures (PROMs). Its psychometric properties were found to be superior to a number of other caregiver needs assessments in a recent systematic review (Kipfer and Pihet, Reference Kipfer and Pihet2020). PBH-LCI, and MYLOH, its slightly briefer revision renamed after further testing and cultural tailoring with African-American and Latinx caregivers (Sadak et al., Reference Sadak, Wright and Borson2018), were conceptualized as a way to assess, and ultimately enhance, caregiver “activation” for health care of people with dementia (Sadak et al., Reference Sadak, Souza and Borson2016). Its items identify caregivers’ perceived knowledge and skills in essential domains of care grouped into seven factors, allowing for scoring elements for which the caregiver is not personally responsible. Domains encompass management of cognitive impairment, behavior, everyday functional deficits, medical conditions, and medications; recognizing and knowing how to deal with changes in the care recipient’s health; communicating and working with clinicians; advocating for the care recipient and making healthcare decisions; and maintaining caregiver well-being through self-care and getting help from others. Low caregiver agreement with an item reflecting knowledge or skill indexes unmet need for coaching and/or support by a clinician or other designated provider. MYLOH is structured to frame conversations and collaboration between caregivers and clinicians on behalf of individual patients; its items and domains have been found to be relevant to caregiving across a range of chronic diseases as well as dementia (Borson et al., Reference Borson, Mobley, Fernstrom, Bingham, Sadak and Britt2018). More work remains to be done to define the optimal format for deploying MYLOH in practice and test its responsiveness to change with targeted caregiver interventions.
Harmonizing caregiver needs assessment across service settings, countries, and cultures
Differences between the two tools described here illustrate the influence of the culture in which measures are developed on what and how they ask caregivers to report. The professional disciplines of their authors, the service setting for which a tool is intended, and the national approach to the organization of services all affect the choice of content and method of assessment, despite the broad commonalities of caregiver needs around the world.
A unifying approach would help harmonize assessments across service sector divides, promote more effective integration of international and multidisciplinary perspectives, and simplify the coordination of care and support services across health and community care regardless of where in the world that care is needed.
One approach could be to use a two-stage assessment process similar to that used in the epidemiological study of complex conditions. For caregiver needs, it could begin with a simple screener for unmet needs. The Dementia Services Mini-Screen (Borson et al., Reference Borson, Scanlan, Sadak, Lessig and Vitaliano2014) is a basic first-stage screener that can be completed in under 5 minutes: caregivers report whether they needed dementia-related medical and/or social services in the past year and whether they had used them, answer a single-item caregiver stress question, and complete a brief patient behavior problem checklist. In this initial study, empirically derived thresholds for stress and behavior problems predicted unmet needs in both health and social care sectors. The second stage to follow a positive screen would then be a more detailed assessment to identify the specific types of service most relevant to the individual dyad.
In many countries, health and social care sectors are divided by strong institutional boundaries, reinforced by different policy agendas and separate, uncoordinated funding streams. These gaps are particularly difficult to bridge in countries that, like the USA, embrace an ethos of self-reliance rather than communalism, have large, highly diverse populations distributed over enormous geographic territory, lack national health and social care systems, and vary widely in regional investment in public health. In smaller and more socially cohesive countries like Denmark, public responsibility for the social safety net for older adults is assumed. Despite their important differences, all developed countries struggle to some degree with how to reconcile social responsibility for compassionate help for the vulnerable with the common realities of budget constraints, maldistribution of needed services, and excessive family burden. The gaps are most obvious where care is viewed as mainly a private responsibility, and this may influence caregivers’ expectations, what they define and identify as needs, and whether and to whom they are willing to reveal the needs they have. Moreover, when needs are assessed with measures developed in languages or cultures other than that of a given target group, simple language translation cannot be assumed to yield a comparable understanding of or responses to the items they contain. Cross-national, cross-cultural collaboration would make an international approach to universalizing assessment feasible and create possibilities for new transnational learning.
Ultimately, harmonizing caregiver needs assessment starts with a focus on the basic aims of care and support for people with dementia and their caregivers. The recent release of a major international workgroup report on the current state of dementia prevention and care (Livingston et al., Reference Livingston2020) acknowledges that well-being – emotional, physical, and social, for both people living with dementia and their caregivers – is the goal of much of care today, and that both health and social care attentive to the needs of the dyad are fundamental to achieving that goal. Asking caregivers what they need lays the necessary foundation (Bangerter et al., Reference Bangerter, Griffin, Zarit and Havyer2019), but it is not sufficient. To become dementia-capable, societies must choose to invest more creatively in policies and practices that address those needs (Fazio et al., Reference Fazio, Pace, Maslow, Zimmerman and Kallmyer2018), despite the constraints inherent in their political, economic, philosophical, and care delivery systems, and invite caregivers to help evaluate how successful we are. Perhaps we can look forward to a time when fewer caregivers are overwhelmed, depressed, exhausted, isolated, lonely, and conflicted, feel they can trust what we have to offer, and don’t wait too long before getting help: when what caregivers can expect to receive is what they need to foster mastery, sustain a sense of purpose, and nurture the wisdom that grows from doing well the thing you fear you cannot do.