Supporting Family Caregivers: Variations in Caregiving Among Families Managing Chronic Health Conditions

Abstract

Families nationwide experience major changes when their person is affected by a chronic health condition. This paper aims to champion the needs of biological, extended or chosen family members (FMs) who provide caregiving, and it urges the field to both understand the nuances of caregiving and tailor effective strategies for serving this often-overlooked group. We use three exemplar conditions—neurocognitive disorder, early psychosis, and substance use disorder—to compare the characteristics that influence family caregiving outcomes. We also offer recommendations on ways to better serve both patients and their families by building research, practice, and policy. As the U.S. population grows, the prevalence of health problems will increase and new generations of FMs will adopt the caregiving role. The demand for psychological services to support families will likely increase as well. Healthcare providers and other clinicians may face challenges in addressing the needs of families, especially for conditions for which multiple effects on caregivers is less-well understood. However, there is hope that ongoing research, education, policy, and awareness will better position the field to support these families moving forward.

The Effects of Caregiving on the Family

An estimated 53 million people, or about one in five adults in the United States, cares for an adult or child with a short-term or chronic health condition¹ (Kilmer et al., 2024). This caregiving goes beyond one’s usual familial role and responsibilities where the family member (FM)—whether biological, extended or chosen—spends considerable time planning and coordinating healthcare, daily living activities, household tasks, and other activities their family member or loved one cannot complete independently.

For many, unpaid familial caregiving can be associated with a host of health and family-related benefits (Brown & Brown, 2014). Studies have found that caregivers experience lower risk of all-cause mortality rates compared to non-caregivers, possibly because the act of caregiving mitigates the adverse health effects of stress (Mehri et al., 2018; O’Reilly et al., 2015; Roth et al., 2015). Other physical health benefits may include improved cardiovascular function and enhanced immune function in some caregiving populations (Brown et al., 2009; Chavan et al., 2024; O’Reilly et al., 2015; Roth et al., 2018).

Many caregivers also report personal growth from navigating their loved one’s care journey, relief that their loved one is well-cared for, confidence in learning new skills, and deeper emotional connections with their loved one (Pendergrass et al., 2019; Pristavec, 2019). In addition, FMs who provide care to their loved ones report personal fulfillment, improved mood, and increased self-efficacy (Mishra et al., 2023; Pendergrass et al., 2019; Zarzycki et al., 2023). These effects may be related to reciprocity and fulfilling cultural norms, sense of duty, and expectations.

Beyond the personal advantages of caregiving, the family system can also experience meaningful benefits. Families often report greater cohesion, communication, and teamwork as they coordinate care responsibilities, provide emotional support, and unite around a shared goal (Peacock et al., 2010). The shared challenge of caregiving can also reconnect families and foster renewed bonds, activating family belief systems and adaptive processes that enhance shared meaning across the family system (Kuang et al., 2023). Caregiving can also function as a family-level stressor that prompts role reorganization and collaborative problem-solving, ultimately fostering resilience and promoting positive outcomes for both individual members and the family as a whole (Henry et al., 2018).

On the other hand, familial caregiving is also associated with high rates of FM strain and associated poor mental and physical health outcomes. Research has consistently identified both subclinical and clinical manifestations of depression and anxiety among caregivers of individuals with Alzheimer’s disease and other dementias (Sallim et al., 2015). In addition, caregivers often experience disruptions in their own health care, such as postponing or skipping routine medical and dental appointments due to time constraints or the absence of alternative support for their loved one (Lin et al., 2023).

The transition into a caregiving role can be an especially stressful time marked by unpredictability and changes in routines and responsibilities, which places caregivers at downstream risk for their own physical and mental health problems (Fox et al., 2012; Lacey et al., 2024). Early studies of caregivers reported that caregiving strain was related to disruption of diurnal variations in cortisol (the “stress hormone”; Gallagher-Thompson et al., 2006); higher mortality, increased inflammation, and declining immune functioning (Gallagher-Thompson et al., 2006; Schulz & Eden, 2016). More recent studies, including several meta-analyses, have reported that caregivers do not show clinically significant increases in inflammation or mortality compared with matched non-caregivers (Mehri, 2021; Roth et al., 2019; Roth et al., 2020). Thus, the impact of caregiving on caregivers’ physical health is unclear and in need of further study.

Family members frequently experience substantial and often overwhelming demands, shifts in established familial roles, and a perceived loss of their pre-caregiving self, which can greatly influence the caregiving experience (Eifert et al., 2015). Making decisions with and for their loved ones can be stressful for caregivers, leading to mixed feelings of satisfaction, regret, guilt, and uncertainty that are long-lasting (Wendler & Rid, 2011). These stressors can undermine the family system, as shifting roles, conflicting opinions, and emotional strain increase the potential for conflict, and interfere with communication processes that are otherwise protective (Scharlach et al., 2006; Suitor et al., 2018).

Caregivers are often considered a “hidden population” because they typically provide extensive unpaid support, often do not identify themselves as caregivers, and frequently are not offered and do not access supportive services in healthcare systems (Wolff et al., 2016). Almost one in four caregivers provide 40 or more hours of care weekly (AARP & National Alliance for Caregiving, 2025). Despite the substantial support they provide to their loved ones, caregivers are often overlooked in healthcare systems and in policy frameworks (Schulz et al., 2020). A minority of caregivers utilize available support services: 25% report using transportation assistance, 14% access respite care, and 25% seek information about financial assistance (Litzelman & Harnish, 2022). Multiple factors contribute to this pattern, including time constraints, competing familial responsibilities, internalized stigma, cultural and moral obligations, limited awareness of available resources, and the perception that seeking assistance may be construed as a sign of inadequacy or a challenge to one’s caregiving role (Messina et al., 2022; Mosher et al., 2015).

A Conceptual Model for Understanding the Effects of Caregiving

Our conceptual model (Figure 1) shows how patient and family member characteristics and contextual factors influence the caregiving experience. Family member outcomes are moderated by patient and FM characteristics and mediated by the context patient and FMs are situated in. Figure 1 also highlights the caregiving experience as a dynamic and evolving process that can change over time since their loved one’s diagnosis. For example, FMs often report more stress immediately after their loved one receives a NCD diagnosis. Stress often decreases and becomes more manageable as they learn new coping skills to handle challenging memory and behavioral problems in the ‘middle’ stage of the dementia. Then, stress is experienced in different ways at the final stage, as FMs grieve the loss of the person who once was and prepare for their passing. FM well-being can also serve both as moderators and mediators. Self-efficacy, for example, can be both a moderator and a mediator when it is impacted by an intervention. Our conceptual model also captures other caregiving frameworks that incorporate the caregiving context (Pearlin et al., 1990; Scharlach et al., 2006), the influence of culture, spirituality, and FM coping style on caregiving outcomes (Knight & Sayegh, 2010) as well as the continual interaction of individual characteristics on outcomes along the patient’s disease trajectory (Gallagher-Thompson et al., 2020).

Figure 1. A conceptual model illustrating the potential influences of patient and family member characteristics and contextual factors on family caregiving outcomes.

Note: ^aFactors noted herein are commonly, but not universally, associated with the caregiving experience;

^b Family member is defined inclusively as biological, extended, and chosen family

In this paper, we demonstrate that the caregiving experience can be understood through a shared lens (i.e., individual characteristics, context, and family outcomes) across diverse health conditions, and with significant variability for each condition. We use three exemplar conditions—neurocognitive disorders (e.g., dementia), early psychosis, and substance use disorders—to describe the ways in which the FMs who provide care are impacted by these disorders. We reference the extensive literature surrounding caregiving for neurocognitive disorders to gain insights into the complexities of caregiving for various other health conditions. We then recommend strategies that researchers, advocacy groups, policymakers, and clinicians can implement to support this frequently overlooked population.

Overview of Exemplar Conditions

Table 1 compares key patient characteristics associated with neurocognitive disorders, early psychosis, and substance use disorders. Collectively, these three exemplar conditions account for 14% of the global disease burden. They are also projected to increase in prevalence over time (GBD 2019 Mental Disorders Collaborators, 2022; Kojima et al., 2024; World Health Organization, 2008; Wu et al., 2023). Neurocognitive disorders (NCDs) are conditions caused by brain dysfunction that manifest with progressive declines in cognition, emotions, and behavior. NCDs include Alzheimer’s disease and related dementias ([ADRDs] and disorders resulting from Parkinson’s disease, vascular disease, frontotemporal degeneration, traumatic brain injury and/or the presence of Lewy bodies. NCDs predominantly affect older adults, with Alzheimer’s disease, for example, typically presenting after age 65.

Table 1.

A comparison of common patient characteristics associated with neurocognitive disorders, early psychosis, and substance use disorders

	Neurocognitive Disorders	Early Psychosis	Substance Use Disorders
Typical Onset	• Later life: 60+ linear increase w/age	• Adolescence or early adulthood	• Across the lifespan
Core Symptoms	• Cognitive decline (e.g., memory, executive functioning); impaired IADLs & ADLs; behavior & psychiatric problems	• Positive (hallucinations), negative (flat affect), and cognitive impairment	• Impaired control, risky use, social/functional impairment, dependence; cognitive impairment
Care Needs	• Varies with stage of dementia: minor at first, progressing to daily care and management of problem behaviors through end of life	• Crisis response, safety planning, facilitating early intervention, and ongoing care	• Crisis response, safety planning, symptom monitoring, navigating multiple care and systems
Course and Prognosis	• Steady and progressive decline over several years	• Variable trajectory; early intervention improves outcomes; recovery possible	• Chronic and unpredictable trajectory; relapse and remission cycle; recovery possible

Note: Instrumental Activities of Daily Living (IADL); Activities of Daily Living (ADL)

In contrast, first-episode psychosis (FEP) primarily emerges during adolescence and early adulthood between ages 15 and 25. FEP is defined as the initial two- to five-year period following the onset of sustained psychotic symptoms persisting four weeks or longer (National Institute for Health and Care Excellence, 2013). Symptoms of psychosis can be chronic and typically present across three domains of symptoms: positive (e.g., hallucinations, delusions), negative (e.g., reduced emotional expression and speech), and cognitive (e.g., impaired attention, memory impairment).

Unlike NCDs and those affected by early psychosis, substance use disorders (SUDs) affects individuals across the lifespan. This is a broad term that describes the chronic and problematic use of a variety of substances such as alcohol, opioids, and cannabis. The DSM-5-TR SUD criteria consists of 11 symptoms assessed over the past 12 months (American Psychiatric Association, 2022) and are categorized into three main areas: Impaired control, social dysfunction and risky use, and physiological dependence (Haber, 2025).

Individual Factors Affecting Caregiving

Patient Characteristics

Patients with neurocognitive disorders often have overlapping comorbidities, symptoms, and brain mechanisms with mental health and SUDs (Bayassi-Jakowicka et al., 2022; Menculini et al., 2021). Individuals with NCDs frequently experience psychiatric symptoms such as depression and anxiety, while psychiatric and substance use are highly comorbid and can result in impaired cognitive functioning (Bulloch et al., 2015; Gandy et al., 2021). Symptoms of psychoses are also common in NCDs during their advanced stages and may arise from shared neurobiological pathways (Lieberman & First, 2018; Ohi et al., 2024; Wingo et al., 2022). Individuals with advanced NCDs often experience hallucinations, delusions, and paranoia, which can significantly complicate caregiving (Brodaty et al., 2015; Marshall, 2024). Similarly, SUDs often involve cognitive impairments such as poor executive functioning and memory deficits that mirror those found in NCDs and psychiatric disorders (Ramey & Regier, 2019).

The patient-level characteristics that differentiate NCDs from other disorders are their later age of onset, pronounced functional impairment, extended duration, and progressive decline, in contrast to the acute onset and episodic yet persistent nature of FEP or the chronic, long-term trajectory observed in SUDs (Table 1). For example, Alzheimer’s disease typically follows a slow, progressive decline beginning with memory loss, and difficulties in learning new information, followed by impairments in executive function, such as the inability to plan ahead or to execute complex tasks that used to be manageable. Behavior problems such as getting lost in familiar places, wandering away from the home, and emotional dysregulation are generally next (Scheltens et al., 2021). In the final stages, the person living with dementia loses their ability to self-care, such as bathing and dressing; most are homebound and some become bedbound due to comorbid medical conditions, which continues until the end of their lives (Galasko et al., 2005; Malhi et al., 2021). Individuals diagnosed with Alzheimer’s at age 65 typically live for at least 8-10 years after the diagnosis, though some may survive up to 15 -20 years (Alzheimer’s Society, 2025; Brookmeyer et al., 2002; Larson et al., 2004). Because patient and FM characteristics change with time, the caregiving experience should be seen as dynamic.

In contrast to the symptoms of NCD, those experiencing early psychosis typically experience changes in their thought processes and perceptions (e.g., hallucinations, delusions, paranoia) that often interfere with educational, social, and occupational attainment. The dramatic onset of these symptoms often requires hospitalization. About 55% of people with FEP are hospitalized once after their first encounter with mental health services, and the average length of stay is 116 days for medication management and symptom stabilization (Ajnakina et al., 2020). About one in ten individuals also encounter law enforcement or mandatory hospitalization in their entry to care (Livingston, 2016). Thus, the care needs for individuals with FEP include stabilization, crisis management, safety planning, and early intervention. Initiating early intervention can reduce the duration of untreated psychosis and greatly improve short- and long-term outcomes (Penttilä et al., 2014). As such, a significant proportion of individuals with a FEP (nearly 60%) recover and reach remission (none or mild symptoms for at least 6 months), and nearly 40% sustain recovery (clinical and functional improvement for more than 2 years) (Lally et al., 2017). In contrast to common public perceptions, many people with psychosis successfully live independently.

Unlike NCDs and early psychosis, SUDs affect individuals across the lifespan. Substance use typically begins in adolescence and peaks in young adulthood, though older adults are also affected by SUDs (Yarnell et al., 2020). Younger age of substance initiation is associated with a greater likelihood of developing SUD within 12 months of first use (Volkow et al., 2021). Recent trends in adolescent substance use indicate an overall decline in past-year use across alcohol, tobacco, cannabis, and most illicit drugs. However, nicotine pouches have emerged as a rising concern for adolescents, highlighting their growing health impacts on this population (National Institute on Drug Abuse, 2024).

In contrast, older adults with SUDs report more concerns with alcohol misuse, prescription drug misuse, and cannabis use (Maree et al., 2016; Yang et al., 2021). Unlike the symptoms exhibited by NCD and early psychosis, individuals experiencing SUDs exhibit a physiological dependence on a substance(s), impaired control, and unsuccessful efforts to cut down or stop using. Negative reinforcement often perpetuates continued use to counter negative affect, pain, and withdrawal symptoms (Koob & Volkow, 2016). Unlike the progressive decline of NCD, but similar to the chronic nature of FEP, individuals with SUD often experience cycles of relapse and remission that require ongoing care. Consequently, the care requirements for individuals with SUDs are typically long-term and involve multiple treatment episodes throughout the care continuum aimed at stabilization (such as outpatient, partial hospitalization, and residential programs). These needs may also encompass various systems, including legal, housing, and child welfare support (Stein et al., 2023).

Similar to individuals with FEP, some people experiencing SUDs are able to reach early remission (not meeting SUD criteria for 3 months) and sustained remission (absence of symptoms for 12 months). For example, an estimated 70% of people with alcohol use disorder naturally recover on their own without formal treatment (Tucker et al., 2020), and those who utilize SUD treatment have significantly higher odds of recovery (Jones et al., 2020). These individual characteristics can directly impact the caregiving experience.

Family Characteristics

Demographics and Family Role

Family member characteristics moderate caregiving outcomes (Figure 1). As previously described, FMs encompass biological, extended, and chosen individuals. FMs who provide caregiving may differ in their demographics, role in the family (spouse, parent, friend), psychological well-being (self-efficacy, coping strategies), cultural and spiritual beliefs, and overall physical and mental well-being. Family conflict and social support can also buffer the impact of individual characteristics on FM physical and mental health outcomes (Pearlin et al., 1990; Scharlach et al., 2006). Further, FMs may not need to provide informal caregiving consistently as many individuals with mild NCD, FEP, and SUD can successfully live independently.

While NCDs affect FMs of all ages, older spouses and partners often face their own health challenges that complicate their availability and ability to provide care to their loved ones (Potier et al., 2018). Increasingly, younger caregivers care for their elderly parents (AARP & National Alliance for Caregiving, 2025). Adult daughters, for example, have been coined as part of the “sandwich generation” caring for aging parents but also their own children and partner, while commonly being employed (Bowman et al., 2017). This trend signals a growing role reversal in which adult children are stepping into caregiving roles traditionally held by older generations.

In contrast, FMs of individuals with early psychosis are often parents who are prolonging their caretaking during a period when other children their age are finding social, educational, and occupational independence (Hazell et al., 2022). FMs are often still employed and caring for younger children or elderly parents while navigating the care of their loved one with FEP (Dillinger & Kersun, 2020). Siblings are uniquely affected by FEP compared to parents, such that they often take on hidden caregiving roles. Siblings of individuals with FEP often have to balance their caregiving role with intense emotional strains such as anxiety, guilt, and fear—particularly when suicide attempts and aggression are involved. These experiences can disrupt their sense of identity, forcing a shift from peer to quasi-caregiver, and impede sibling bonds by reducing warmth and increasing conflict. Many also experience social withdrawal or secrecy to protect family privacy (Bowman et al., 2017).

The experiences of family members affected by SUDs vary by the age of their loved one and can also change over time. Family members who are parents and guardians of adolescents with SUD, for example, may need to navigate school and healthcare decisions, address the legal and social consequences of substance use, and provide support for comorbid mental health concerns (Curtis et al., 2019; Hogue et al., 2021; Hornberger & Smith, 2011). They may also be financially and legally responsible for their child’s welfare and liable if their child’s substance use harms others (Sbeglia et al., 2024). Parents of adult children with SUD may have enhanced responsibilities such as providing additional care for their grandchildren, which can alter their retirement plans and create multigenerational caregiving responsibilities (Dolbin-MacNab & O’Connell, 2021). Unique to SUD compared to NCD and early psychosis is the concordance of substance use among couples, where shared substance use is often associated with closeness and intimacy and makes recovery potentially challenging (Testa et al., 2022). Siblings, a relatively understudied group, face distinct challenges, often reporting feelings of neglect, resentment, and jealousy due to the attention directed toward their sibling’s SUD. This group also faces an increased risk of substance use themselves, especially when influenced by older siblings (Low et al., 2012). When considered together, these dynamics highlight how FM characteristics such as demographics and family role can affect the caregiving experience in different ways. This research also further documents how more is known about biological FMs and that other extended or chosen FMs are understudied in the literature.

Cultural and Spiritual Beliefs

Cultural and spiritual beliefs about caregiving, as well as how culture views a specific health condition, can markedly affect FM outcomes. However, these values and beliefs may exhibit more similarities than differences across the three health conditions discussed in this paper. For example, in many Asian cultures, caregiving is seen as a moral or familial duty regardless of the diagnosis involved. Belief in filial piety dictates that adult children are expected to care for aging parents without the expectation of external support or recognition and irrespective of the diagnosis or type of problem the older adult is experiencing (Yue et al., 2022). In situations where “duty” prompts caregiving, FMs may feel may feel obligated to care for a relative with whom they are estranged.

Research on the impact of cultural beliefs on caregiving has been more extensive for NCDs than for FEP or SUD. Generally, studies indicate that when dementia symptoms are interpreted as “mental illness,” families often experience stigma and shame, which may lead them to conceal their loved one’s condition and limit help-seeking both within the family and through community-based services (Yeo et al., 2018). In contrast, within many Latino communities, where familism is a strong cultural value, dementia symptoms are frequently seen as part of “normal aging,” resulting in delayed engagement with supportive services until later stages of the disease (Montoro-Rodriguez & Gallagher-Thompson, 2009). Dementia care is often delayed in immigrant Chinese and Vietnamese family caregivers as well because dementia is associated with “normalized” trajectories of aging rather than recognized as signs of a distinct or treatable condition (Liu et al., 2008). In addition, cultural views of mental health and SUD are sometimes perceived as moral failings or personal weaknesses, increasing social stigma and contributing to caregiver isolation (Kaynak et al., 2024; Yang et al., 2014).

Caregiving is generally perceived as less stressful among Black/African American caregivers (Dilworth-Anderson & Gibson, 2002) due mostly to strong spiritual beliefs and their extensive supportive network (Dilworth-Anderson & Gibson, 2002; Imoh & Charity, 2023). Among Black communities, strong religious faith helps alleviate caregiving stress, as faith can offer comfort and practical support (e.g., “challenges are a gift from God”; Dilworth-Anderson et al., 2004). Programs within congregations designed to reach this population focus on promoting dementia education, offering caregiving support, and advocating for dementia-friendly religious communities (Epps et al., 2022). Religion and spirituality also appear protective for FMs of individuals with FEP, providing emotional support, community, and resilience (Murray-Swank et al., 2006; Pearce et al., 2016), but the benefits for FMs of those with SUD are less clear despite the important role religion plays to support patient recovery (Koenig et al., 2020). The caregiving experience can thus be influenced by a myriad of FM factors including their cultural and spiritual beliefs.

Psychological Well-Being

The psychological well-being of the FM influences the caregiving experience across health conditions. These characteristics have been well-studied in the NCD literature and can provide insights into the characteristics of FMs affected by FEP and SUD. Family members affected by NCD who have high self-efficacy (especially self-efficacy to control or modify negative thoughts about caregiving) report improved psychological well-being (Cousins-Whitus et al., 2025). The FM’s resilience and self-efficacy in managing unpredictable and competing demands also influence the degree to which FMs experience emotional distress and poor health outcomes (Gérain & Zech, 2019; Poe et al., 2023).

Coping strategies such as problem-solving, emotion-focused approaches such as acceptance, and seeking social support are consistently associated with reduced psychological distress and improved adjustment among caregivers across a wide range of health conditions and caregiving contexts (Cheng et al., 2019; Hawken et al., 2018). Preliminary work with FMs affected by SUD suggests that higher FM self-efficacy and the use of adaptive coping strategies are associated with reduced emotional burden, greater perceived control over caregiving situations, and improved ability to maintain supportive relationships with their loved one (Roozen et al., 2010; Swanepoel et al., 2023). Thus, resilience-building (through such mechanisms as increasing the caregivers’ sense of self-efficacy and encouraging them to learn a variety of new coping skills specific to their situation) are often the target of FM interventions, and can mediate improved family outcomes.

Context

Societal context refers to how stigma, culture/family influences and social support mediate the effects of caregiving outcomes on the family member (Figure 1). Structural facilitators and barriers are policy and organizational-level factors that can also mediate outcomes. These include healthcare policies (insurance and financing), ease of healthcare navigation, logistical access barriers (childcare, transportation), and fragmented systems of care. Societal and structural contexts directly interact with each other such that attitudes about the etiology of a health condition as well as the beliefs about caregiving can directly influence healthcare policy and the availability of FM support services.

Societal Facilitators and Barriers

The societal context significantly differs among FMs affected by NCD, FEP, and SUD. The context surrounding NCDs has evolved over time, leading to a deeper and more empathic understanding regarding the factors that impact caregiving for NCDs. Early views of Alzheimer’s Disease were highly stigmatizing: individuals were often depicted as identity-less beings, reinforcing a loss of personhood and moral failure (Behuniak, 2011). This stigma frequently extended to caregivers (i.e., courtesy stigma), where FMs were judged, socially excluded, and were scrutinized due to their association with the disease (Werner & AboJabel, 2020). Support services for FMs were historically sparse and often regarded as unnecessary, reflecting limited recognition of caregiver strain and needs during early stages of Alzheimer’s research and policy development (Yang et al., 2016).

Through research, advocacy, and increased education, Alzheimer’s and other neurocognitive disorders became less stigmatized over time. This shift was driven in part by the operationalization of patient symptoms into clearly defined diagnostic criteria, such as those outlined in the DSM (American Psychiatric Association, 2022) and the NIA-AA (McKhann et al., 2011) guidelines. The development and widespread use of validated cognitive assessment tools likewise enabled clinicians to objectively diagnose specific NCDs (Albert et al., 2011; Dubois et al., 2007). Caregiver activities and strain were also operationalized terms and normalized as common and shared experiences (Sainsbury & de Alarcon, 1970; Zarit et al., 1980), and population-based studies were funded for the first-time, revealing the higher rates of medical, mental health, social, and financial impairments experienced by caregivers compared to non-caregivers of the same age (Greene et al., 2017; Haugland et al., 2020).

Cultural values were shown to promote family cohesion and buffer caregiver strain while conflicting values increased caregiver strain (Falzarano et al., 2021; Knight & Sayegh, 2010). This research also raised awareness for the lack of resources available to support caregivers, as well as hesitation by caregivers to seek support even when it was offered (Harding et al., 2015; Penner et al., 2024). The field thus began to understand the important role of social support. Family members affected by NCDs with greater informal support from their extended family, friends, and social networks and formal support from community resources (e.g., churches, peer support groups, respite care programs) were significantly more likely to experience growth from the caregiving experience, fewer health consequences, reduced stigma, and improved psychological well-being than FMs without these types of supports (Gallagher-Thompson et al., 2020).

In contrast to perceptions about NCD, negative attributional views regarding FEP and SUD persist. Individuals experiencing FEP are commonly misperceived as dangerous, aggressive, and unpredictable, often leading to others social distancing from these individuals (Franz et al., 2010). Those with SUD are commonly misperceived as having moral failings or bad character, leading to a common belief that their substance use is “their fault” with social rejection and punishment as common consequence (Earnshaw, 2020). The stigmatizing perceptions of both of these conditions may extend to FMs. FMs of individuals with FEP often experience social isolation and are perceived as responsible for their loved one’s behavior (Singh et al., 2016). Similarly, FMs of individuals with SUD experience stigma by association being blamed for the substance use and facing social exclusion (Wilkens & Foote, 2019). Parents of children with FEP and SUD are particularly susceptible to this blame, siblings may be seen as “contaminated” genetically, and the family system may feel at blame for care navigation failures if their loved one’s symptoms persist (Corrigan & Shah, 2018). In a study interviewing parents of children with SUD, one parent shared “Everyone, meaning the community, everyone blames you. Because you’re the mother, everyone blames you.” Another parent stated “it feels like you’re alone, like you can’t talk to anybody about it because…they’ll judge you, they’ll think badly of you, or they’ll judge the person that you love” (Kaynak et al., 2024).

Other societal influences such as family dynamics and social support influence the caregiving experiences for FMs. Similar to NCD, FMs affected by FEP and SUD are positively affected by greater family cohesion and more negatively affected by discord. Decision-making about care planning is often a stressful trigger that can divide families. For example, families affected by NCD may face difficult decisions related to their loved one’s progressive decline (e.g., whether to move from in-home care to a skilled nursing facility and how to manage end-of-life care), families affected by early psychosis may differ with their loved ones on their views about the most appropriate treatment, the use of antipsychotic medication, and if, or when, hospitalization may be necessary. Finally, families affected by SUD may differ on how to respond to their loved one’s ongoing substance use (e.g., tough love), where to seek treatment, and how to manage substance-related consequences (Lodge et al., 2022).

Structural facilitators and barriers

Other external influences also shape the caregiving experience, including healthcare policies, the availability of healthcare resources, ease of healthcare navigation, logistical barriers, and the extent of care fragmentation. These factors can also change over time as health financing and policies shift, or different resources become more available to patients and their families.

Advocacy groups such as the Alzheimer’s Impact Movement (AIM) have played a critical role in shaping public policy, increasing federal research funding, and advancing legislation to support caregivers and those affected by Alzheimer’s and other forms of dementia (Alzheimer’s Association, 2025b). Federal funding and policy initiatives at the federal level, such as the National Alzheimer’s Project Act (Assistant Secretary for Planning and Education, 2024; Centers for Medicare & Medicaid Services, 2025), the Congressionally-mandated RAISE Family Caregivers Act (Cacchione, 2019), the 2022 National Strategy to Support Family Caregivers (Administration for Community Living, 2022) , and most recently the BOLD Infrastructure for Alzheimer’s Act (Centers for Disease Control and Prevention, 2025) were enacted to identify, optimize, and prioritize strategies to support caregivers. Some of these initiatives have provided federal funding support to biomedical research that seeks to find a cure for ADRD, with a smaller percentage allocated for caregiver-focused behavioral and mental health research. State-level policies have also protected caregiving in workplaces – seven states in the U.S. have employment antidiscrimination laws to ensure employees are not penalized for taking leave for caregiving responsibilities (AARP & National Alliance for Caregiving, 2025). These policies seek to decrease burden and improve care navigation for dementia patients and their caregivers, and can serve as a model for other health conditions.

A key factor in the greater availability of caregiver supports, including mental health services, is the development of new billing codes by CMS (Centers for Medicare & Medicaid Services, 2025) that were instituted in 2024. These codes allow for providers to bill for their time spent with caregivers—whether or not the patient is present—as well as paying more for more time spent developing treatment plans for the patient. These new codes recognize the complexity of dementia care and are widely regarded as key to advancement of clinical practice, so that more of what is learned through clinical research can be readily implemented in actual practice. These codes also encourage care teams to engage the FM sooner and motivate FMs to be involved early in the treatment process, before their loved one’s health deteriorates.

As a result of these efforts, FMs are increasingly recognized as integral members of the care team when their loved one requires higher levels of support. They are much more readily provided with educational materials on dementia and caregiving resources and may have access to supportive services such as community-based adult day programs, online support groups, and mental health services. However, the availability of caregiver-specific resources for NCDs varies substantially by geographic location, with urban areas offering the most comprehensive services and rural regions having considerably fewer options (Gallagher-Thompson et al., 2023).

Families are often integrated into the care team when their loved one experiences NCD and FEP. For patients with NCD and FEP, early intervention with the patient and chosen FM is critical. The Age-Friendly Health System Caring for Caregivers (AFHS-C4C) model, developed at the Rush University Medical Center, promotes the systematic support of FMs by actively incorporating them into health care practices and providing resources that enhance their own well-being through reductions in perceived caregiver burden, depression, and anxiety caregivers (Center for Excellence in Aging, 2025; Golden et al., 2022). Involving families as early as possible in FEP treatment has been demonstrated to greatly enhance an individual’s recovery, reducing symptoms, rates of hospitalization and family burden (Claxton et al., 2017; Gleeson et al., 2025), as well as treatment engagement (Stowkowy et al., 2012) and medication adherence (Pharoah et al., 2010). Family interventions for psychosis (FIp) refers to any psychosocial intervention for caregivers and their loved ones that provides psychoeducation, skills practice, and support (Ma et al., 2018). These interventions can be delivered individually, or in a group, or more recently via digital interventions. Psychological interventions to help teach FMs to manage their emotions and communicate effectively is especially important during early psychosis because critical and unhelpful styles of interacting and communicating within families (known as expressed emotion) have been widely demonstrated to have a detrimental effect on individuals with psychosis (Kavanagh, 1992; Miklowitz et al., 1989; Pharoah et al., 2010) including increased symptom severity and more frequent relapse (Schlosser et al., 2010).

Despite their evidence, less than two percent of families in the United States receive basic family psychoeducation for FEP (Interdepartmental Serious Mental Illness Coordinating Committee, 2017). Family members of SUD are also less integrated into the patient’s care team when compared to NCD leading to more fragmented systems of care. The current model of SUD treatment focuses primarily on the patient and FMs are not often included in care planning. This pattern leads many FMs trying to find and access resources, education, and community support on their own. Often, the exhaustion and hopelessness FMs experience from navigating SUD treatment for their loved one leaves little space to find support for themselves (Kaynak et al., 2024).

The ease of healthcare navigation positively impacts FM outcomes when care for patients and FMs is accessible, timely, and coordinated. Barriers to navigation are often shaped by patient-, FM-, and system-level factors affecting timely receipt of care include readiness for treatment, severity of condition, and insurance coverage, all of which influence access to appointments, treatments, and follow-up care (National Academies of Sciences, Engineering, and Medicine, 2018). For FMs, low health literacy is a significant barrier—caregivers that have more difficulty finding, understanding, and using health information have more than 2.5 times higher odds of struggling with health care communication and arranging services compared to those with higher literacy (Fields et al., 2018). Clinic-level obstacles such as restricted billable services and inadequate care coordination further impede timely access, while logistical challenges like employment demands, transportation difficulties, and childcare add additional strain (Megan McArthur et al., 2024; Wolfe et al., 2020). Taken together, the structural context in which the patient and family are embedded can impact positive and negative caregiving outcomes.

Family Outcomes

Positive Effects

Fewer studies report on the positive impacts of caregiving compared to its negative effects. However, there is a strong premise that many experience growth from caregiving. The construct of stress-related growth describes how positive psychological changes can result from challenging life events by learning new perspectives and coping skills as well as strengthening relationships and self-efficacy (Park & Fenster, 2004). Empirical research has demonstrated that personal self-sacrifice can lead to an increased sense of self-worth, greater resilience, and higher self-efficacy among those affected by NCD (Devi et al., 2020). Positive outcomes may similarly develop over time for families affected by FEP and SUD.

Negative Effects

As described previously, self-reported stress is one of the most prevalent psychological complaints among caregivers of individuals with dementia or other NCDs (Hawken et al., 2018). Research indicates that nearly half of dementia caregivers experience heightened levels of stress, highlighting an urgent need for accessible coping strategies (Sallim et al., 2015).

Negative effects on physical and mental health are also common among FMs affected by FEP and SUD. Approximately 40% of FMs caring for a person experiencing a FEP report poor mental health such as elevated depression and anxiety (Estradé et al., 2023; Jansen et al., 2015; Onwumere et al., 2016; Sin et al., 2021). This distress is particularly heightened during early psychosis (Onwumere et al., 2016), when FMs must face the sudden acute onset and nature of symptoms, diagnostic ambiguity, and unpredictability of the course of this relapsing and remitting condition (Wainwright et al., 2015). The acuity of FEP often requires FMs to quickly adopt the role of default frontline provider and care coordinator (Brain et al., 2018). Family members often report a sense of “unpreparedness” (Estradé et al., 2023) as they manage new challenges such as acute crisis, suicidality, fear for their loved one’s and their own safety (Fusar-Poli et al., 2022), and witnessing their loved ones hearing or seeing things others do not (hallucinations) or holding and acting on non-consensus beliefs of reality (delusions).

Family members of individuals with SUD are twice as likely to experience depression, anxiety, and develop their own SUD than people in families without an individual with SUD (Kane et al., 2024; Newton et al., 2016). Family members of individuals with SUD often describe living under constant stress, feeling as though they must remain on “high alert,” overwhelmed by ongoing worries and uncertainty about the life and well-being of their loved one (Kaynak et al., 2024; Lodge, 2022). This experience may be similar to when psychosis is chronic, but the alertness attributed to NCD may be different and related more to home safety and wandering. Families affected by SUD also frequently report experiencing significant exhaustion, burnout, and despair while managing the challenges of caring for their loved one. Because of the chronicity of addiction, FMs often experience highs and lows associated with cycles of lapses (brief and temporary returns to substance use), relapses (resumption of regular substance use), and remission (lack of or minimal SUD symptoms). Chronic stress related to their loved one’s SUD often leads families to engage in maladaptive coping strategies and experience higher levels of hopelessness, emotional distress, and communication difficulties (Horváth & Urbán, 2019). Common consequences also include reduced sleep and quality of life, along with heightened social, financial, and health-related challenges (Di Sarno et al., 2021; Kaynak et al., 2024).

Financial strain is a common negative outcome to caregiving. In 2023, unpaid FMs of NCDs provided an estimated 18.4 billion hours of care that translated to $350 billion in savings to the government (Alzheimer’s Association 2025a, 2025b). If the caregiving role is transitioned to one that is less hands-on, additional care from non-family sources from Medicare and/or Medicaid benefits may be used, which incurs costs to federal and/or state governments and can also incur cost-sharing for the family (Reuben et al., 2023). Insurance data indicate that long-term dementia care is more expensive than other forms of care (Li et al., 2024) costing roughly $405,000 over a person’s lifetime, which is nearly double the cost to care for older persons without a major NCD. Roughly 70% (about $285,000) of this cost is absorbed by FMs who donate time and out-of-pocket expenses (Alzheimer’s Association, 2025a).

The financial implications of caring for a person with FEP who may be unable to work also adds to the emotional toll FMs face. Unlike NCD, where the person with NCD may already be retired and with life savings, unemployment amongst those with psychosis is typically high (Ajnakina et al., 2021). Families often need to take leave from work and reprioritize their financial plans related to retirement or other future needs (Wainwright et al., 2015). For most individuals, the FEP either occurs before they have left home or necessitates a return to home from college or independent living.

Similar to NCD and FEP, treatment for SUD incurs high costs associated with out-of-pocket expenses and reduced work productivity, but FMs may be uniquely affected by financial costs associated with multiple treatment episodes, legal and child welfare issues, and their own medical costs (Ray et al., 2009). As a result, the dual burden of caregiving and financial strain can significantly impact the overall well-being of family members.

Family Interventions

Family member outcomes can be influenced by family-focused interventions. While it is beyond the scope of this paper to review all the available FM interventions for each of the three conditions, we focus on describing more established approaches including CBT, family therapy, digital tools, and peer support.

Cognitive behavioral therapy for FMs is well-studied across all three conditions. These approaches often blend psychoeducation, help FMs restructure thoughts associated with low mood about the caregiving experience, strengthen their self-efficacy as well as learn behavioral coping strategies to enhance their well-being (e.g., problem solving, positive communication, behavioral activation).

For NCD, FMs who engage in CBT programs report significantly better outcomes than controls, with one meta-analysis of 12 randomized controlled trials finding significant decreases in depression symptoms post-intervention compared to usual care (Kwon et al., 2017). In addition to these findings, scholarly reviews of CBT-based psychoeducational interventions indicate that caregivers also benefit from augmented coping skills, increased self-efficacy, and reduced stress (Cheng et al., 2020; Gallagher-Thompson et al., 2000; Gallagher-Thompson et al., 2025).

For SUD, the Community Reinforcement and Family Training (CRAFT) is well-studied and uses CBT strategies to improve the quality of life and functioning of the FM, reduce substance use of the person, and engage their loved one in treatment (Smith & Meyers, 2023). The research on CRAFT suggests that when FMs participate in individual CRAFT sessions, their loved ones are twice as likely to initiate SUD treatment compared to those receiving alternative approaches (i.e., Al-Anon/Nar-Anon Facilitation and the Johnson Intervention) (Archer et al., 2020; Meyers et al., 1998; Miller et al., 1999). Findings also suggest that FMs who participate in CRAFT experience better emotional functioning and reduced levels of anxiety and depression (Waldron et al., 2007). Preliminary findings from studies conducting group-based CRAFT in the context of outpatient OUD treatment settings show that the groups are rated high in acceptability and address a critical gap in care (Osilla et al., 2024; Ueland et al., 2025).

Cognitive behavioral therapy is used less frequently for FMs in FEP compared to NCD and SUD, but a more recent intervention, Psychosis REACH, provides FMs with recovery-oriented psychosis psychoeducation, CBT for psychosis (CBTp) skills, as well as behavioral and self-care strategies. To enhance applicability, the intervention is co-delivered by CBT clinicians and trained peers. Studies evaluating Psychosis REACH have shown improvement in FM depression and anxiety, as well as reductions in caregiver burden, psychosis related stigma, and expressed emotion at home (Kopelovich et al., 2021; Stiles et al., 2025).

Family-inclusive therapy interventions, which involve both the patient and their family attending sessions together, have shown positive outcomes across the three conditions. For NCD, family-inclusive multi-component interventions that integrate skills training, problem-solving, and psychoeducation have demonstrated reduced caregiver burden, improved FM and patient coping, and delayed institutionalization of the care recipient (Brodaty & Arasaratnam, 2012). For FEP, Family Focused therapy (FFT) (Miklowitz et al., 2014) and Multi-Family Groups (MFG) (McFarlane et al., 1995) utilize a combination of psychoeducation, family therapy and cognitive behavioral therapy with the family not as the recipient of therapy per se but as a key collaborator (Lavis et al., 2015; McFarlane, 2016). Family interventions for psychosis are linked to improved FM outcomes including reduced burden, psychological distress, improved caregiver appraisals and knowledge, and increased readiness to offer care (Gleeson et al., 2025; Lobban et al., 2013).

A well-studied family-inclusive therapy for those affected by SUD is Alcohol Behavioral Couple Therapy (ABCT), a dyadic intervention that brings a non-substance-using FM and their married or cohabitating partner together in treatment (McCrady et al., 2016). ABCT blends traditional cognitive-behavioral approaches that focus on enhancing communication, increasing shared positive activities, and building behaviors that support long-term abstinence (McCrady et al., 2016, 2019). Couples who participate in this approach report improved relationship satisfaction, and persons experiencing SUD reported decreased use and SUD consequences compared to individual therapy (Powers et al., 2008). Importantly, ABCT addresses both personal and relational factors that can impact recovery, recognizing that a supportive, stable relationship is a key predictor of positive outcomes (McCrady et al., 2016, 2019).

Digital health tools and interventions for FMs aim to improve the delivery and access to psychoeducation interventions and peer support. Unique to NCD are apps that help FMs track their loved one’s location, medication management, and behavior/symptom management (Castillo et al., 2024). A systematic review of digital interventions showed that these tools can positively affect various domains of caregiver health, including emotional, social, and self-care outcomes, underscoring their utility in addressing multifaceted caregiver needs (de-Moraes-Ribeiro et al., 2024). A scoping review similarly noted that digital mental health tools can support emotion regulation, coping skills, and skill-building in caregivers—though it also highlighted a scarcity of comprehensive, theory-driven apps tailored specifically to the mental health needs of older-adult caregivers (Petrovic & Gaggioli, 2020).

For FEP, digital tools are still emerging, but there is evidence that tools that range from providing psychoeducation and self-care tools to support sessions over video conference improve clinical outcomes such as FM stress, emotion expression, and self-efficacy; however, some studies have found that in-person interventions with FMs outperform digital interventions (Münchenberg et al., 2024). For SUD, few digital tools have been evaluated specifically for FMs. However, there is evidence in support of the feasibility and acceptability of web-based interventions such as CRAFT delivered via telehealth to FMs affected by alcohol and opioid use disorders (Osilla et al., 2018, 2024) and co-occurring early psychosis and SUD (McCarthy et al., 2022).

Peer support is a widely accessible resource across all three conditions. Organizations such as the Alzheimer’s Association, NAMI Family-to-Family, Al-Anon/Nar-Anon, and SMART Family and Friends provide easy access and valuable assistance to those who seek it. For example, peer-based support for FMs affected by FEP leverages the lived experiences of individuals who have navigated similar challenges - this approach aims to empower through shared experiences, reduce stigma and isolation, and share effective coping strategies (Ma et al., 2018). In the FEP literature, peer-based support has been demonstrated to reduce caregiver burden and be more effective at improving family functioning compared to psychoeducation alone (Ma et al., 2018). Involving caregivers in peer-led support programs, where facilitators share their lived experiences of caring for someone with SUD, has been shown to reduce stigma by normalizing caregiving challenges, offering empathetic validation, and creating safe spaces grounded in experiential expertise (Substance Abuse and Mental Health Services Administration, 2023). Additionally, peer and broader social support play a vital role in caregivers’ well-being. Higher social support and healthier family system functioning are significantly associated with better caregiver quality of life, with social support generating a strong buffering effect on caregiver stress and perceived burden (Kalra et al., 2024).

Discussion

Biological, extended, and chosen families undergo significant transformations when their loved one’s health changes. Our conceptual model highlights the dynamic process where multiple factors can moderate and mediate the family’s caregiving experience over time. Many experience positive effects from reunification, collaborative problem solving, and reciprocity, while others experience negative effects such as conflict and health consequences. Family members may experience positive and negative effects simultaneously, which can generate mixed emotions and add to their experience of stress.

Advocacy groups, policymakers, researchers and clinicians can use the same lens of characteristics and context to view the caregiving experience. Our aim is for these stakeholders to recognize the complexities of caregiving and to create tailored strategies that support caregiving family members, who are often overlooked. Table 2 compares our perspectives on the current state of policy, research and practice for neurocognitive disorders, early psychosis and substance use disorders alongside suggested future recommendations.

Table 2.

A comparison of the current state of proposed policy, research and practice recommendations for FMs affected by neurocognitive disorders, early psychosis and substance use disorders

	Neurocognitive Disorders	Early Psychosis	Substance Use Disorders
Policy Recommendations
Engage Advocacy Organizations	✔✔✔	✔	✔
Implement Supportive Employment Policies	✔✔	--	--
Finance implementation of evidence-based interventions	✔✔	✔	--
Research Recommendations
Identify Key Factors Influencing Caregiving	✔✔✔	✔✔	✔
Evaluate Effects of Caregiving on the Family System	✔	✔✔	--
Practice Recommendations
Assess Care Needs	✔	✔	✔
Normalize help-seeking and promote self-care	✔✔	✔	✔
Prioritize Families within Healthcare Systems	✔	✔	--

Note: Check marks denote progress on proposed recommendations (-- : insufficient; ✔ : low, ✔✔ : moderate, ✔✔✔ : high)

Policy Recommendations

Engage Advocacy Organizations

The NCD field began with the development of grassroot advocacy organizations led by individuals with lived experience who shared their insights, spearheaded public health campaigns, and educated the public and legislatures on NCD and its effects on families. Organizations such as the Alzheimer’s Impact Movement and American Cancer Society pushed for local and federal change, shared data from national caregiving surveys, and provided resources to the public and healthcare systems. Congress also passed legislation that secured the necessary appropriations for policy implementation. These activities collectively moved the NCD field forward rapidly and significantly reduced stigma towards individuals and families affected by NCD.

To enact change for caregivers affected by other conditions, we can learn from, partner with, and empower advocacy organizations to influence policy. For FEP and SUD, national organizations exist to promote policy efforts and their impact is growing. For FEP, the National Alliance on Mental Illness (NAMI) engages in nationwide education efforts, policy advocacy, and resource allocation to expand access to specialty care, bolster early detection programs, and enhance federal funding for mental health services. The Early Psychosis Intervention Network (EPINET), sponsored by the National Institute of Mental Health (NIMH), also provides education and collects clinic-level data nationally to support policy and advocacy efforts. For SUD, Substance Abuse and Mental Health Services (SAMHSA) provides national recovery support by funding efforts to educate the public about the risks of substance use, developing community-based treatment services, increasing prevention activities, and acquiring and analyzing substance use data across the United States. The National Survey on Drug Use and Health (NSDUH) also disseminate annual statistics of the prevalence of SUD and associated consequences to inform subsequent research, policy development, education, and advocacy initiatives targeting a national reduction in the incidence and severity of SUD. These and other organizations should be empowered to advocate for FMs by disseminating their data and talking with state and federal officials about the unique challenges caregivers face as well as their specific needs.

Implement Supportive Employment Policies

There is a growing need for policies to support FMs who are employed. Only seven states in the U.S. have enacted laws to protect against workplace discrimination based on caregiver status (AARP & National Alliance for Caregiving, 2025). This is particularly concerning as 70% of U.S. caregivers report working full- or part-time in another occupation and over half (56%) report needing to arrive later, leave early, or take time off for caregiving responsibilities (AARP & National Alliance for Caregiving, 2025). Policymakers need to assess existing and conflicting state-level family leave policies. Addressing this issue through state-based and federal policies that accommodate for the challenges employed caregivers face is crucial for promoting family well-being and ensuring a healthier workforce.

Finance the implementation of evidence-based interventions

Policies that equip FMs early in their patient’s care with knowledge, tools, and resources may help prevent downstream health consequences for the patient, FM, and the larger family system. Financing policies are needed to implement and disseminate evidence-based FM-based interventions. Evidence-based and evidence-derived interventions for family caregivers include cognitive behavioral therapy and related psychoeducational programs. Digital tools that increase access to information and alert caregivers to risk, telehealth services that decrease FM access barriers, and reimbursement codes that incentivize healthcare providers to include FMs in care planning and implementation should also be promoted. Without the financial backing to support intervention implementation, we run the risk of deepening the existing research-to-practice gap and hindering advances in our knowledge about caregiving, which ultimately affects the care we provide to families and the prevention of downstream consequences for both the patient and their families. Unpaid caregivers play a crucial role in saving the government billions in costs, and now is the time to make a meaningful investment in their well-being.

Research

Research and policy have a reciprocal relationship. As policies grow to support caregivers, funding for enhanced research and knowledge also increases. We have observed this trend from the NCD literature: As our understanding of caregiving has expanded, policies have facilitated FM respite care and incentivized providers to include FMs to discuss their loved one’s care and also their own support needs. Pairing policies with ongoing research is needed to measure the effects of these policies on outcomes and costs. Unfortunately, very few policy changes are supported by ongoing and rigorous program evaluation, which hampers the ability to justify these changes and advance progress effectively (Green et al., 2025).

Identify Key Factors Influencing Caregiving

We have identified several patient and FM characteristics that affect the caregiving experience and have shown that these vary by health condition. As significant chronic health and mental health conditions become more prevalent, the demographics of caregivers may change and the effects of relationship type and other characteristics may evolve. For example, future studies examining caregivers outside the nuclear family are needed in recognition of the significant role chosen family and peers play in caregiving. Future research could also examine how factors like cultural and spiritual beliefs, as well as psychological well-being, may provide protection for caregivers across various health conditions, and how caregiving interventions can be tailored to align with these common characteristics.

Evaluate the Effects of Caregiving on the Family System

Future studies could further explore the bidirectional relationship of how caregiving affects family-level systemic factors and vice versa. Dyadic studies recruiting the patient and FM are promising and innovative areas of research in this context (Osilla et al., 2024; Rosland et al., 2022), but do not further our understanding of the systemic effects associated with caregiving. Future studies may explore the confidentiality and HIPAA concerns related to family unit involvement, ways to recruit the family unit and how that is operationalized, and statistical methods to account for collinearity when data from FMs influence each other and discordance when FMs differ. Family decision-making is often a source of conflict and future research could explore interventions that help empower communication and other strategies that facilitate decision-making processes and strengthen cohesion within the family.

Practice

Assess Care Needs

Clinicians are in a unique position to provide support to families. Clinicians may range in discipline from medical to mental health professionals who offer psychosocial support as part of the patient’s care team or through community resources. Clinicians in low-resource settings can also be supported by unlicensed, trained staff who provide team-based collaborative care to patients and their families (Possin et al., 2019). Clinicians who are part of the patient’s team may first familiarize themselves with who is in the patient’s family. Then, they can assess the family’s experience with caregiving, assess their needs, and tailor interventions accordingly. In some case, clinicians may seek additional training and continuing education to learn about the unique needs of caregiving.

Some families may lack education about the patient’s care trajectory or the available treatment options, while other families may have misperceptions and stigma about certain treatments that may deter their loved one from accessing it. For example, stigmatizing attitudes about medications for opioid use disorder from FMs are associated with poorer mental health and opioid use overdose behaviors (Choi et al., 2025; Shah et al., 2025). Clinicians who may be seeing a FM in the community may need to start by familiarizing themselves with their patient’s health condition (e.g., what are the symptoms of SUD?) to provide psychoeducation to the FM and better understand the FM’s experiences before tailoring interventions.

Clinicians can also familiarize themselves with assessment tools to assess the effects of caregiving on the FM. These may be tools clinicians are already familiar with, such as the PHQ-9 for depression (Kroenke et al., 2001), GAD-7 for anxiety (Spitzer et al., 2006), but there may also be nuanced ones for assessing caregiving burden and internalized stigma, such as the Zarit Caregiver Burden Interview (Seng et al., 2010) and the Caregiver Self-Assessment Questionnaire (Epstein-Lubow et al., 2010), respectively. While evidence-based strategies exist for families, tailoring the target behavior (e.g., stigma reduction) and intervention (e.g., cognitive restructuring) based on those assessments will help FMs feel heard, seen, and understood.

Normalize help-seeking and promote self-care

Overall, clinicians should encourage FMs to prioritize their self-care and well-being, recommend resources from peer support to psychotherapy, and explore ways to expand their support system. They can reassure FMs they are not alone in their challenges, validate their struggles, strengthen their mental resilience, and build their self-efficacy. To find resources for NCD, the Alzheimer’s Association offers a range of resources, including a 24/7 helpline, support groups, and information on local services (Alzheimer’s Association, 2025a). The government sponsors a comprehensive website called Alzheimer’s and related Dementias Education and Referral Center (ADEAR). In addition, both offer resources in other languages, which can be helpful when working with immigrant groups or low-literacy clients. Finally, a directory of evidence-based programs for dementia family caregivers is maintained online by the Benjamin Rose Institute.

For resources about FEP, organizations such as NAMI, the Early Assessment and Support Alliance (EASA) and the Schizophrenia and Psychosis Action Alliance (S&PAA) provide FMs with support groups, community-based psychoeducation, and stigma-reduction materials. For SUD, organizations such as Partnership to End Addiction, CMC: Foundation for Change, and Faces & Voices of Recovery offer both patient and FM-focused recovery resources, treatment navigation assistance, and community-building opportunities to assist FMs managing their loved one’s substance use. Peer support organizations are a widely accessible resource across all three conditions and may complement therapy or other support for the family. Organizations such as the Alzheimer’s Association support groups, NAMI Family-to-Family, Al-Anon/Nar-Anon, and SMART Family and Friends provide easy access and valuable assistance to those who seek it.

Prioritize Families within Healthcare Systems

Healthcare systems can also play a vital role in family-inclusive care. Administrators in these systems can prioritize family involvement amongst their staff by implementing standardized screening procedures that ask patients about their social network (who is supportive and committed to their recovery or not, how often they interact, their attitudes towards their health and treatment plan), train staff on family inclusive interventions and therapies, implement or partner with organizations that provide FM support groups and/or family therapy, and provide resources to families (e.g. financial support, respite care, peer support). Administrators can also incentivize staff to work flexibly with FMs who face competing demands (e.g., groups after work hours; telehealth options). Providing support to families as part of their loved one’s treatment offers FMs an opportunity to align with their loved one’s treatment goals, correct any misperceptions about the treatment their loved one is receiving, and receive emotional support themselves. Such support enables family members to develop skills that enhance their well-being and strengthen their relationships, allowing them to sustain their caregiving role longer.

Conclusion

Family members inevitably experience major changes when their loved one is affected by a chronic health condition. The combination of positive experiences, psychological distress, physical health challenges, and life transformation of caring for loved ones is not unique to any single condition. However, the degree to which families experience negative mental and physical health outcomes varies by health condition, the characteristics of the patient and FM, and the surrounding context in which both the patient and family are embedded, are nuanced.

Frequently overlooked by treatment systems, caregiving FMs face challenges that make them unlikely to seek mental health care for themselves. It is critically important to acknowledge the experiences FMs share, the pivotal role they can play in prevention and early intervention, and the need to support FMs to improve their quality of life and prevent downstream consequences for the family system. Such support will help FMs to feel heard and seen, diminish the stigma that impacts their families, and incorporate FMs into health systems as essential allies in patient care. Multiple stakeholders in the field can work to serve both patients and their families, empowering entire families to heal together. It is both possible and beneficial to help overlooked caregiving FMs thrive by building policy, research, and practice.

Public Significance Statement.

Biological, extended, and chosen families undergo significant transformations when their loved one’s health changes. This paper aims to champion the needs of families who provide caregiving, and it urges the field to both understand the nuances of caregiving and tailor effective strategies for serving this often-overlooked group.