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. Author manuscript; available in PMC: 2026 Sep 23.
Published in final edited form as: Clin Geriatr Med. 2025 Sep 17;42(1):89–99. doi: 10.1016/j.cger.2025.08.005

Dual Experience and Management of Pain in Older Adults and their Caregivers

Jeffrey T Boon 1, Shelbie G Turner 2, Catherine Riffin 3
PMCID: PMC13595347  NIHMSID: NIHMS2201058  PMID: 41271285

Introduction

Chronic pain is among the most common and debilitating diseases worldwide, and older adults are disproportionately affected. Recent national data from the United States indicate that 37.8% of older adults (ages 65 and older) experience chronic pain, and that the prevalence is highest (42.8%) among individuals over the age of 85.1 Similar estimates have been reported in surveys conducted in Europe and Asia, suggesting a rising global trend in the prevalence and incidence of pain.2

Chronic pain is a multifactorial condition that is influenced by a range of biological, psychological, and social factors, including family dynamics and caregiver support. Guided by the biopsychosocial (BPS) model of pain for older adults, this article presents the latest research on the dual experience of pain in older adults and their family caregivers. We first present the major risk factors for pain in older adults and further consider the fundamental role of family caregivers in pain assessment and management, particularly for persons with cognitive impairment. We then describe an emerging body of literature that focuses on caregivers’ own experience of pain and its impact on their caregiving abilities, emphasizing the importance of using a dyadic approach to understanding and addressing pain management. We conclude with a discussion of emerging opportunities in healthcare delivery, payment, and technology that may promote broader uptake of dyadic interventions in clinical practice.

Review

Chronic Pain in Older Adults: A Biopsychosocial Perspective

Pain is widely recognized as a multifactorial health condition. According to the biopsychosocial (BPS) model of chronic pain in older adults, the experience of pain in later life is affected by a dynamic interplay of biological, psychological, and social factors unique to older adults.3 This model extends the original BPS Model by highlighting specific characteristics (e.g., comorbid health conditions, ageism) that may impact different dimensions of pain (e.g., type, location, severity, interference, management) and outcomes such as physical function and quality of life among older adults. The model promotes a holistic approach to the prevention, assessment, and management of pain in later life. For example, multimorbidity (a biological factor) may influence choices in pharmacologic intervention while anxiety (a psychological factor) and lack of social support (a social factor) may affect choices in non-pharmacologic therapies.

Biological factors, such as increasing biological age, multimorbidity, fatigue, and sleep disturbances have been linked with pain severity and interference among older adults.4,5 Psychological factors, such as depression, anxiety, and stress have also been shown to influence pain trajectories across the lifespan and play a particularly salient role among older adults who experience psychological symptoms at higher rates than the general population.6,7 Beyond clinically diagnosable conditions, like depression and anxiety, other psychological factors such as pain catastrophizing, fear of movement, and pain self-efficacy all have an important influence on older adults’ pain.8,9

Likewise, a range of social factors may affect older adults’ pain experience, namely family relationships, social support/isolation, ageism, and elder abuse, as well as characteristics such as race, ethnicity, culture, and socioeconomic status.10–12 For example, the prevalence of pain is especially high among Black American adults, and in Native American and multiracial groups.13 Social factors not only influence the pain experience itself but also contribute to racial and ethnic disparities in pain management.14

Chronic Pain: A Family Affair

While the BPS model of chronic pain in older adults was developed to elucidate the multifactorial influences of pain on the individual sufferer, it also has implications for understanding the interpersonal consequences of pain among older adults and their caregiving relatives. Family caregivers of persons with chronic pain are highly involved in their care recipients’ care. They not only assist with mobility and personal care tasks, but also often facilitate pain management regimens and offer emotional support, especially for older adults with comorbid cognitive or mental health conditions, such as cognitive impairment15 and/or depression and anxiety.16 Assuming these responsibilities can have deleterious consequences for caregivers. Among spouses, for example, caring for a partner with chronic pain is associated with high levels of burden and occupational changes, often resulting in discontinuation of employment.17

A nascent body of literature has explored the interpersonal consequences of chronic pain, highlighting the reciprocal influence between older adults’ experience and expression of pain and caregivers’ responses and reactions.18 For some families, pain is a source of conflict and marital strain, particularly in the face of an uncertain and unpredictable course of disease.19 For others, it serves to unite them by creating a “common purpose.19” In general, caregivers’ emotions mirror the older adults’ emotional distress about their symptoms, with studies suggesting high levels of congruence in depression and anger among dyads coping with pain.20 In a recent study, family support and relationship strain were shown to impact trajectories of pain development and persistence among African Americans.21

Numerous chronic pain interventions have been developed for older adults. Existing interventions show modest effects, in terms of improving pain intensity, pain interference, and physical performance, with multicomponent interventions generally showing the highest efficacy.22,23 Accumulating evidence suggests that couples-based/dyadic chronic pain interventions may offer greater benefits than interventions targeting individuals, in terms of their potential to improve chronic pain intensity, function, depression, communication skills, and dyadic coping.24,25 The benefits extend to both the care recipient and caregiver, resulting in a joint benefit. Thus, a key recommendation for future research and clinical practice is the development, evaluation, and implementation of joint-education and dyadic interventions to support effective management of pain in a caregiving dyad.

Dyadic Associations Between Caregiver and Care Recipient Pain

Caregivers’ own pain impacts how they perceive, assess, and manage care recipients’ pain. For example, Orgeta et al.26 found that caregiver-rated (proxy) pain of care recipients with dementia was predicted by caregivers’ own experience of pain. Likewise, care recipients’ overall limitations, especially their cognition, impact their responses to caregivers’ pain. Namely, care recipients’ reactions to caregivers’ pain can be contentious when a care recipient has dementia with accompanying behavioral symptoms such as agitation and paranoia.27

We encourage future research on caregivers’ pain to take a dyadic approach by probing pain among both caregivers and care recipients. Epidemiologically, given the high prevalence of pain among both caregivers and care recipients, the number of caregiving dyads with both partners reporting pain is likely high, though this number has not been empirically determined. The interpersonal nature of pain necessitates a dyadic approach to pain assessment, and we encourage increased surveillance of pain at the dyadic level. Assessment should be integrated at the point of care for both the care recipient and the caregiver. Though probing caregivers’ pain challenges existing systems (e.g., clinicians’ liability, reimbursement, time), a dyadic approach to pain assessment is consistent with family-centered care delivery and ensures the well-being and safety of both the patient and caregiver. In practice, clinicians would assess pain in both the patient and caregiver using standardized scales. Systematic identification of caregivers’ pain would enable clinicians to design alternative care plans that would not require the caregivers’ assistance with physically demanding care tasks such as mobility support. Box 1 provides a set of practical strategies for clinicians to consider implementing in the context of geriatric pain care that supports family-centered care delivery.

Box 1. Strategies for Advocacy For Pain Management in Older Adults.

  • Clinicians should recognize the importance of the family caregiver’s knowledge. The caregiver knows the person intimately and is often best able to detect behavioral deviations that may indicate pain.

  • Clinicians should recognize the reciprocal impacts of pain in the caregiving dyad. The impact of pain in the care recipient (as well as the tasks of pain assessment and management) on the caregiver are a key part of assessing an older adult’s care.

  • Clinicians should solicit information about caregivers’ concerns in pain assessment and management. Oftentimes, clarifying information (especially about potential adverse effects of medications) can help caregivers better manage pain in themselves and the care recipient.

  • Documentation can be helpful for clinicians in understanding pain patterns and impacts. Clinicians can encourage pain diaries to track pain occurrence, dimensions, and response to intervention for both the caregiver and care recipient.

  • Clinicians should account for the caregiver’s pain experience when developing a plan of care for an older adult. The plan of care will only be effective if the caregiver’s own condition allows them to implement it. Alternative planning may be needed when a caregiver’s pain precludes some caregiving tasks. This may require significant creativity and collaboration such as seeking the support of ancillary services (physical therapy, social work).

  • Evidence-based resources for family caregivers of older adults can be found on websites such as geriatricpain.org. These resources can be used based on a clinician’s judgment as part of a holistic plan of care that includes the family caregiver and care recipient.

Family Caregivers’ Role

Pain Management and Emerging Strategies for Caregiver Support

Although family caregivers can play a crucial role in older adults’ pain care, they receive little training and guidance in effective pain assessment and management strategies. With respect to pain management, family caregivers report limited knowledge about best practices to manage pain (e.g., accurate assessment, use of pain medications), difficulty communicating effectively with healthcare providers, and issues related to the care recipient such as a decreased ability to report pain.28 These issues become increasingly problematic with age, as progressive decrements in physical and cognitive function require caregivers to assume greater responsibilities to provide adequate pain care.

In recognition of the unique challenges that dementia family caregivers face, geriatric researchers have focused on developing and testing interventions to support this especially vulnerable group.29,30 With family caregivers playing a key role in pain management for people living with dementia, it remains important for geriatrics providers to focus on family communication and education.31 For example, caregivers have expressed concerns about pharmacologic management of pain, particularly opioids.32 Such data highlight the importance of caregiver education in the appropriate use of opioids with other research suggesting that caregivers may also benefit from education in the use of non-opioid analgesics given that many older adults may have renal or hepatic insufficiency. A key strength that family caregivers have is their long history with the person for whom the provide care.32 Clinicians can acknowledge and honor this strength while helping caregivers understand how to use this experience with the care recipient to be effective in assessment and management of pain.

Pain Assessment and Emerging Strategies for Caregiver Support

Family caregivers have been recognized by health professionals as having important information relevant to pain assessment for people living with dementia.33 Integration of caregivers into the pain assessment process for persons living with dementia may facilitate earlier detection of symptoms, and consequently, more effective and timely pain treatment.34 However, caregivers themselves report difficulty in accurate pain assessment.35 And recent research suggests that persons with dementia and their family caregivers vary in their assessment of pain interference.36 People with dementia may report less pain interference in themselves than is perceived by their caregivers, especially when the caregiver perceives more depression in the person with dementia.

In the absence of cognitive impairment, pain assessment is typically conducted via self-report, relying upon the individual to provide information and describe his or her discomfort. However, neurodegenerative changes associated with dementia may inhibit the individual’s ability to verbally articulate the presence, location, and severity of pain, resulting in the need for caregivers to assess based on other information.37 While the process of pain assessment may be intuitive on the part of the family caregiver using their first-hand experience of the person, there are numerous elements that family caregivers use for data points to make an assessment including observing pain-related behaviors, rechecking after intervention, seeking a self-report from the person, and seeking causes of pain.38

Formal interventions to support family caregivers in accurate pain assessment may become more readily available to caregivers and clinicians in the future. Studies have examined using behavioral pain assessment tools for people with dementia by non-healthcare providers,34 prompting the possibility of their inclusion in family caregiver interventions. Already, interventions utilizing mobile health technology30 or telephone-based coaching with an interventionist to learn skills such as the use of pain assessment tools for people with dementia and communication about pain with healthcare providers.29 Such interventions represent an opportunity to bring the science of pain management out of the hospital or long-term care setting and into the community for older adults and their caregivers—particularly those with dementia.

Caregivers’ Own Pain

The dual experience of pain in caregivers and the older adults to whom they provide care requires attention to caregivers’ own pain. In addition to managing care recipient pain and the associated caregiving challenges, caregivers commonly experience chronic pain themselves. Some caregivers may experience pain prior to assuming the caregiving role (e.g., a preexisting condition), whereas others may exhibit new pain associated with the onset of caregiving (e.g., overexertion when lifting a care recipient).

Recent epidemiologic evidence from the National Study on Caregiving, a population-based survey in the United States, indicated that 50% of family caregivers to older adults report bothersome pain and 25% of those caregivers report pain-related activity limitations on most days or every day.39 In the same sample, 40% of family caregivers to older adults reported a diagnosis of arthritis.39 Other population-based data indicate that over 70% of older caregivers experience pain.40

Caregivers’ pain exacerbates caregiving challenges, and is associated with care recipient unmet needs.41 As such, in additional to being highly prevalent, it is also highly consequential. Yet, caregivers’ own pain is commonly overlooked and underreported due to individual-level factors (caregivers’ reticence to disclose pain), practice-level factors (lack of caregiver pain assessments in clinical practice), and system-level factors (lack of reimbursement structures to support routine pain identification in caregivers). Thus, the true prevalence of caregivers’ pain may be higher and its impact even starker than is currently estimated.

Potential Risk Factors for Caregivers’ Pain

As is true for older adults in general, advanced age is a risk factor for caregivers’ pain.39 Given that many family caregivers are older adults themselves (over half are over the age of 65)42, the high incidence of pain among caregivers is unsurprising. However, emerging evidence suggests that caregiving itself is a risk factor for pain. Caregivers are more likely to report pain compared to same-age non-caregivers.40 Further, more intense caregiving (i.e., higher number of hours per week) is associated with greater pain intensity, leading researchers to speculate that there is a dose-response effect between caregiving and pain.40

Subjective caregiving experiences also appear to play a role in the extent to which caregivers report pain. For example, many caregivers also report care-related anxiety and depression, and psychological distress can strengthen sensitivity and perception to pain. Indeed, caregiver burden is associated with caregiver pain.43 Caregivers also frequently report sleep disturbance44, which predisposes people to pain.45 Evidence suggests the connection between caregivers’ well-being indicators – such as stress and reduced sleep – and their connection to pain are dependent on genetic profiles46; thus, some caregivers may be at a heightened genetic risk for pain.

Pain-Related Challenges to Caregiving

Pain often makes caregiving more difficult, and when caregivers with pain have physical challenges with care tasks, they nearly always attribute those challenges, at least in part, to their pain.47 Guided by the empirical research conducted with dementia family caregivers with pain, a recent conceptual model of caregiving27 offers a framework for the challenges posed by pain and their associated consequences for caregiving. The model categorizes pain-related caregiving challenges into three domains: physical challenges (e.g., difficulty lifting care recipients), emotional and psychological challenges (e.g., worry about future progression of care if their pain conditions worsen), and familial and relational challenges (e.g., resentment towards family members without pain for not helping with care). Importantly, despite these challenges, caregivers report benefits to their pain, such as being more sympathetic to care recipients’ pain.

Interventions

Interventions to Help Caregivers Manage Their Own Pain

Interventions to support caregivers’ ability to manage their own pain amidst performing caregiving tasks are essential, but few exist. A scoping review of the empirical literature on family caregivers’ pain identified only five caregiver pain management interventions, only four of which directly targeted pain.48 These interventions included “MY-Skills,” a yoga-based self-management program for caregiving dyads with pain;25 therapeutic exercise;49 massage therapy;50 palliative care education;51 and the Building Better Caregivers intervention,52 which does not directly target pain but includes pain as an outcome measure in studies testing its efficacy.

In addition to these existing interventions, researchers at Weill Cornell Medicine have recently launched a project to adapt an established pain management intervention, Problem Adaptation Therapy for Pain (PATH-Pain), for use by dementia family caregivers who have their own persistent pain and associated mental health symptoms (e.g., negative affect) and comorbidities (e.g., depression).53 PATH-Pain is a psychotherapy-based intervention effective at reducing pain and pain-related disability by lessening negative emotions and promoting positive emotions, making it especially relevant to caregivers with pain given they frequently have negative emotions stemming from their pain, which are compounded by caregiving-related stressors.

Relatedly, many caregiver interventions target caregivers’ emotional and psychological distress, including those focused on alleviating caregivers’ pain burden. Thus, expanding the caregiver pain management intervention repertoire to also include interventions that incorporate physical supports to caregivers with pain are warranted. For example, paid caregivers and nursing staff in healthcare clinics often receive safe patient handling training and have access to patient transfer lifts. Offering these sorts of trainings to family caregivers would likely be well-received. Additional supports may include modifications to the home setting (for example, adding stairway railings or shower grab-bars), physical activity and strength training interventions aimed at pain control and injury prevention, and expanded access to home health care workers who can assist with high-risk care tasks. These sorts of resources to family caregivers, especially those with pain and pain-related disability, are likely to be well-received and effective.

Adapting these interventions so that they can exist alongside pharmacological (e.g., prescription pain medications, opioids) and other medical treatments for pain (e.g., surgery) is also important to consider. The side effects of pain medication may make caregiving more challenging or even dangerous and unsafe for both caregivers and care recipients. Some caregivers report being hesitant to take prescribed pain medications or other treatment (e.g., surgery) out of fear of negative side effects (e.g., drowsiness) or prolonged recoveries that would infringe on their ability to provide care. Alternatively, there is emerging speculation that other caregivers’ might be at an increased risk for pain medication misuse, particularly if they have access to care recipients’ medication (i.e., medication diversion).54 Supporting caregivers’ ability to appropriately navigate their own pain management treatments alongside providing care are necessary not only for caregiving outcomes, but also for the caregivers’ longer-term health. At least for pain medication and opioids, options include pain medication monitoring, education, and drug take-back programs designed specifically for caregivers.

In designing and implementing new interventions to support caregivers’ pain management, researchers might benefit from referencing conceptual frameworks, models, theories. Turner et al.’s27 conceptual model of the caregiving challenges posed by pain can help researchers determine intervention targets. Implementation science frameworks, as well as the NIH Stage Model of Behavioral Interventions, will also be helpful for guiding intervention development so that interventions and the studies to test them are feasible and acceptable to the individuals and systems both delivering the interventions and receiving them.

Caregiver-Targeted Interventions in Real-World Care Delivery

New innovations in healthcare delivery, technology, and payment afford unprecedented opportunities for integrating pain management interventions into care delivery settings. For example, the Caregiver Advise, Record, and Enable (CARE) Act stipulates that hospitals provide training for caregivers at patient discharge. Among the states that have implemented the CARE Act, communication between patients, caregivers, and care teams has improved.55 Relatedly, the Guiding an Improved Dementia Experience (GUIDE) Model for Medicare beneficiaries with dementia and their caregivers aims to support caregivers by requiring caregiver training and support (through evidence-based programs) and 24/7 access to a support line. The Center for Medicare Services recently launched CPT codes for caregiver training. It is possible that rehabilitations providers (e.g., occupational and physical therapists) are promising vehicles to deliver caregiver pain management interventions. Given the new CPT codes, home health care agencies can now be reimbursed for these services, possibly increasing the likelihood of their uptake. Medicare Part B plans also cover Transitional Care Management (TCM) CPT billing codes, which includes education for care team members (i.e., family caregivers). Importantly, these codes include non-face-to-face communication with Medicare beneficiaries and their families. Delivering interventions via telehealth may afford expanded access to people with pain and mobility limitations.

Summary

Chronic pain remains prevalent among older adults, but it is no longer sufficient to think of it in the context of one person experiencing pain. Many biological, psychological, and social factors contribute to the experience of pain. Among the psychological and social factors, the caregiving dyad experiences pain together in many ways with significant interpersonal connections influencing the pain of both individuals. Assessment and intervention for pain should take the dual experience in the caregiving dyad into consideration for optimal management.

Key Points:

  • Chronic pain is highly prevalent among older adults and their family caregivers with profound effects on their physical health, relationship functioning, and emotional well-being.

  • Pain in one member of the dyad (e.g., the caregiver’s own pain) can affect how they perceive, assess, and manage the other’s pain and vice versa.

  • Family caregivers can play a key role in facilitating pain assessment and management in their care recipients, but they experience ambiguity, uncertainty, and a lack of knowledge in these areas.

  • Dyadic interventions, involving both the older adult and their family caregiver, are necessary to support effective pain management in both parties.

Clinics Care Points.

  • Dyadic interventions for pain management, including joint education in assessment and treatment approaches, may be more effective than individually based interventions for caregiving dyads.

  • Clinicians should acknowledge the family caregivers’ relationship and knowledge of the care recipient as the foundation of pain assessment and management.

  • Clinicians should offer education and support to family caregivers to support more accurate pain assessment when the care recipient is cognitively impaired.

  • Clinicians should take time to provide pain management education focused both on non-pharmacologic management as well as patient-specific pharmacologic management to address caregivers’ concerns about opioid analgesics as well as hepatic and renal effects of using non-opioid medications.

  • A dyadic approach to pain assessment should be used when possible and appropriate to optimize pain management for both members of a caregiving dyad with pain.

  • Clinicians should consider the unique needs of each caregiving dyad and offer appropriate treatment modalities (such as telehealth) to optimize pain care.

Synopsis:

This article presents an overview of the dual experience of pain in older adults and their caregiving relatives. Guided by the biopsychosocial (BPS) model of chronic pain for older adults, we describe the major risk factors for pain in later life and consider the interpersonal consequences of pain for caregiving dyads. We discuss caregivers’ role in pain assessment and management and consider how caregivers’ own pain may impact their caregiving abilities and responses to their care recipients’ pain. We advocate for dyadic approaches to pain management and present novel opportunities to promote uptake of dyadic pain interventions in clinical practice.

Disclosures:

The authors report no disclosures. Dr. Riffin reports funding from the National Institute on Aging (NIA) under award numbers R01 AG079932, P30 AG02284, and K01 AG061275. Dr. Boon has received salary support under NIA award numbers R01 AG061325 and R01 AG059861. Dr. Turner reports funding from NIA under award number K99 AG086523.

Footnotes

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