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Aging Caregivers: What To Know And How To Best Provide Support

Aging Caregivers: What To Know And How To Best Provide Support
Christina Marsack-Topolewski, PhD, MSW, LMSW
January 24, 2024

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Editor's note: This text-based course is a transcript of the webinar, Aging Caregivers: What To Know And How To Best Provide Support, presented by Christina Marsack-Topolewski, PhD, MSW, LMSW.

Learning Outcomes

  • After this course, participants will be able to identify the rewards, responsibilities, demands, and challenges experienced by aging family caregivers.
  • After this course, participants will be able to recognize the unique realities experienced by aging family caregivers.
  • After this course, participants will be able to list strategies and opportunities to support aging family members in providing care to loved ones receiving occupational therapy.

Introduction

Thank you all for joining today. The work we engage in holds a particular significance, especially in supporting aging caregivers who navigate the intricate challenges that come with their roles. I understand that our diverse fields often involve frequent interactions with caregivers and individuals who are both aging and providing care. This adds layers of complexities and realities to our work.

First and foremost, I express my gratitude to each of you for being present here today. It's truly inspiring to have individuals from across the United States, each contributing to this conversation from diverse settings – be it hospitals, schools, subacute rehab settings, or involvement with pediatrics and adults. Thank you sincerely for your presence, and I look forward to learning more about the spectrum of work that each of you is engaged in.

Today's Focus

  • Occupational therapy practitioners provide a tremendous amount of support to patients who receive support from an aging family caregiver. Aging family caregivers often face unique circumstances and are at risk for burnout and exhaustion.
  • This one-hour webinar will provide an overview of the state of caregiving for aging family caregivers and provide implications for occupational therapists who may intersect with this population of caregivers in their own work.

In our discussion today, let's delve into the pivotal role of occupational therapists in the context of aging family caregivers. Many of you, I presume, have extensive experience working with family caregivers, and as time progresses, the likelihood is that a significant portion of your work will involve supporting aging family caregivers. This demographic often grapples with unique challenges.

In some aspects of my work, we identify aging family caregivers as an "invisible caregiving population." The nature of their responsibilities and the care recipients they assist—whether it's a singular recipient or multiple—places them in a precarious situation characterized by the invisibility of their efforts at the family caregiver level.

As we navigate through this one-hour webinar, my aim is to provide you with an overview of the state of caregiving. I'll share relevant statistics and insights, particularly focusing on aging family caregivers. This exploration will shed light on the implications for occupational therapists who may encounter this population in their professional spheres.

Having collaborated with occupational therapists at the university for over a decade, I've consistently contemplated the intersection of our work. How does our understanding of caregiving inform the practices in social work, occupational therapy, nursing, and other health and human services fields? The relevance becomes evident as we consider our roles in supporting not only clients, consumers, and patients but also their families.

Some of you may find yourselves assisting older adults undergoing occupational therapy while working with younger or spousal caregivers. It's a dynamic landscape that requires a nuanced approach, and I look forward to exploring these intersections together.

Rosalyn Carter Quote

I find immense resonance in the quote from former First Lady Rosalynn Carter: "There are only four kinds of people in the world, those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need a caregiver." It serves as a powerful reflection on the interconnected nature of caregiving within our society.

What Comes to Mind?

  • What comes to mind when you think of family caregivers?
  • Now… think about what comes to mind when you think of aging family caregivers.
  • Please share your thoughts in the chat.

Caregivers have multifaceted experiences and challenges they navigate with caregiving. Burnout, stress, the dynamics of spousal relationships, exhaustion, and the profound love that underlies their efforts—all resonate deeply. The acknowledgment of limited resources and the potential for injuries underscores the need for a thoughtful approach, particularly in occupational therapy, to alleviate the physical toll on caregivers.

Isolation and the feeling of being alone add another layer to this complex narrative. It's a stark reminder of the inherent circumstances that may contribute to the sense of isolation in the caregiving journey. There is a delicate balance caregivers must strike between their responsibilities and the potential challenges of simultaneously maintaining employment.

In my work with the College of Business at the university, we explore ways to support caregivers who are not only dedicated to their caregiving roles but also actively engaged in the workforce. This intersection of caregiving and professional responsibilities brings forth a unique set of considerations that deserve our attention.

Recent Statistics

The data from AARP and the National Alliance for Caregiving, extracted from 2020, provides a staggering insight into the significant role family caregivers play in supporting older adults and individuals with disabilities. With over 53 million family caregivers shouldering the majority of the support that enables older adults and those with disabilities to live in their communities, the sheer scale of this caregiving network is profound. Additionally, more than 2.7 million grandparents, along with an unspecified number of kin and relative caregivers, bear the primary caregiving responsibilities for children.

Reflecting on these numbers, it becomes apparent that family caregivers form a substantial portion of our society. The impact of the pandemic further unveiled existing challenges, barriers to service access, and limitations in service availability and accessibility. The intricate web of challenges faced by caregivers extends to the overall infrastructure affecting not only caregivers but also our consumers, patients, and clients. There exists a dynamic and reciprocal relationship between caregivers and those receiving care, each influencing the other in profound ways, hopefully for the better.

Throughout our discussion today, it's crucial to keep in mind the challenges embedded in the formal or paid service network and the formal social support network. The structural issues, including affordability, accessibility, and location, often pose significant hurdles. For instance, the implications of having to travel long distances, especially in rural areas, to access services can be profound for both the patient or consumer and their family members. The pre-existing fragmented and subpar service landscape has been further spotlighted by the COVID-19 pandemic, emphasizing the need for a more cohesive and robust support system. Even our direct service professionals may face limitations in providing essential services like respite care, further emphasizing the strain on the system's capacity.

Aging Family Caregiving

  • Over half of family caregivers in the US are over 50 years old
  • Nearly 1 in 5 are over 65 years old

(American Association of Retired Persons [AARP] & National Alliance for Caregiving, 2020)

A crucial aspect to consider as we set the stage is that over half of family caregivers in the United States are over the age of 50. This demographic characteristic underscores the prominence of aging family caregivers in our caregiving landscape. The implications of this are significant, especially when contemplating the unique needs and challenges faced by older caregivers.

In certain settings, such as schools, where some of you may be working with younger populations, the role of grandparents as caregivers becomes increasingly relevant. Grandparents often play a vital role in providing care for children, whether due to family members' constraints or work commitments. This dynamic highlights the interconnectedness of generations within the caregiving framework.

Additionally, it's noteworthy that nearly one in five family caregivers is over 65 years of age. This demographic insight emphasizes the potential vulnerabilities and specific considerations that come with caregiving for individuals in this age group. As we explore the nuances of supporting aging family caregivers, these demographic realities will undoubtedly shape our understanding and approach to providing effective care and support.

  • Provide support to loved ones with and without disabilities and chronic conditions
    • Lifelong disabilities (e.g., lifelong caregivers, invisible caregiver populations)
    • Disabilities likely to result from accidents
    • Disabilities related to normative or non-normative aging
    • Chronic conditions and illnesses

When considering support for loved ones, it's crucial to acknowledge the diverse spectrum of caregivers who play pivotal roles in different caregiving contexts. Caregivers may be providing support to individuals with lifelong disabilities, such as developmental disabilities. As those with lifelong disabilities age, they may encounter both normative and non-normative health issues, thereby impacting their family caregivers. These caregivers, often referred to as lifelong caregivers, face unique challenges, and some may even fall into the category of invisible caregiver populations.

A notable example is aging family caregivers who are supporting adult children with Down syndrome comorbid with dementia. The heightened neurological propensity for individuals with Down syndrome to experience dementia, often at an earlier onset, places these caregivers at risk. They may lack the visibility and support that is crucial for addressing their specific needs.

Other reasons for aging family caregiving include disabilities resulting from accidents, care for aging spouses or siblings, and the challenges associated with normative and non-normative aging. Chronic conditions and illnesses further add complexity to the caregiving landscape.

A significant portion of aging family caregivers comprises grandparents, aging parents, and spousal caregivers. These individuals collectively constitute over 50% of caregivers in the U.S. Many times, they find themselves caring for each other, presenting unique challenges within familial relationships. Programs like Lori's Hands in Michigan, Baltimore, and Delaware shed light on the fact that older adults receiving in-home support may not always identify their spouse as a caregiver. This nuanced perspective reflects the enduring nature of spousal support, where caregiving roles may not be explicitly recognized due to the longstanding reciprocal assistance within the relationship. Understanding and addressing these intricacies are essential for providing effective and tailored support to caregivers in various caregiving scenarios.

  • Grandparents
  • Aging Parents
  • Aging Spousal Caregivers
  • Other

The varied ways in which family caregiving manifests highlight the complexity and diversity within caregiving scenarios. It's important to recognize that individuals may serve as family caregivers without necessarily identifying or explicitly acknowledging their roles as such. This dynamic is mirrored on both sides, where the care recipient may not recognize the caregiving role of their family member.

This nuanced perspective underscores the need for creativity and innovative approaches when it comes to involving family members in the healthcare process. It's not uncommon for individuals providing care, especially within familial relationships, to downplay or not explicitly label their caregiving responsibilities. Similarly, care recipients may view the support they receive as a natural and inherent part of their relationships, overlooking the formal recognition of caregiving roles.

In healthcare settings, finding ways to bring family members into the conversation, even when they might not overtly identify as caregivers, can contribute to more effective and comprehensive healthcare delivery. Strategies that foster open communication, create a supportive environment, and acknowledge the various forms of caregiving are crucial. This recognition lays the foundation for a collaborative and patient-centered approach, ensuring that the caregiving dynamics within families are acknowledged and leveraged for optimal healthcare outcomes.

Poll #1

In your work setting, what conditions are bringing patients/ consumers to your care?

Thank you all for participating in the poll and sharing the diverse conditions that bring patients or consumers to your care. The range of responses reflects the multifaceted nature of healthcare settings, encompassing long-term illnesses, accidents, falls, developmental delays, and balance issues, among others.

As we consider these conditions, it's crucial to recognize the varied challenges that family caregivers may face. Whether it's a sudden event like a stroke or the management of long-term illnesses, understanding who the family caregivers are in these situations is essential. The role of family caregivers becomes particularly prominent when individuals experience health events that necessitate ongoing care and support.

Multiple Caregiving Roles

  • Multiple care recipients
    • Caring for 2 or more loved ones simultaneously
  • Compound caregiving (Perkins, 2010)
    • Term used to refer to an existing caregiver of an adult with a developmental disability assuming care of an additional care recipient

*Possible complexities and competing needs and demands within one’s roles

Let's explore the dynamics of multiple caregivers, a scenario where individuals find themselves caring for two or more loved ones simultaneously. This situation can arise when someone already caring for an adult with a lifelong disability takes on the additional responsibility of caring for another family member, such as a spouse or parent who becomes ill. Coined by Dr. Elizabeth Perkins, this concept highlights the intricate balancing act that caregivers face when juggling multiple caregiving roles alongside other life responsibilities.

The duality of relationships and the potentially competing needs of multiple care recipients introduce significant complexities. Each care recipient may have unique and diverse needs, adding layers of challenges for the caregiver. For instance, the needs of an individual with a lifelong disability may differ significantly from those of someone who has recently experienced a stroke.

It's essential to keep these complexities in mind when offering recommendations, strategies, and support for caregivers in your work settings. Recognizing the intricacies of multiple caregiving roles and understanding the potential impact on the caregiver's own well-being can enhance the effectiveness of the support and guidance provided. As we navigate the discussion around family caregiving, these considerations become crucial elements in tailoring our approach to best meet the diverse and evolving needs of caregivers.

Agenda By Topic

  • Topic 1 -> Rewards, responsibilities, demands, and challenges experienced by aging family caregivers
  • Topic 2 ->Unique realities experienced by aging family caregivers
  • Topic 3 -> Ways to support aging family caregivers

Topic 1: Rewards, Responsibilities, Demands, and Challenges Experienced By Aging Family Caregivers

Rewards

  • Pride in care recipient’s progress and growth
  • Feelings of personal competence
  • Changed perspective on life
  • Deeper connections with others
  • Meaningful experience

(Marsack-Topolewski, Perry, & Chan, 2021)

Exploring the realm of family caregiving involves acknowledging the diverse aspects of rewards, responsibilities, demands, and challenges that caregivers face. One noteworthy observation from a national study on aging family caregivers of adults with autism is that nearly all participants highlighted the rewards associated with caregiving. The rewards were multifaceted and often transcended the inherent challenges of the caregiving journey.

Some of the significant rewards caregivers mentioned included witnessing growth and progress in their loved ones. This sense of pride stemmed from contributing to the developmental journey and being a supportive presence in the face of challenges. Additionally, caregivers expressed feelings of personal competence when advocating for services or obtaining resources for their loved ones. The caregiving experience was seen as an opportunity for personal and interpersonal growth, leading to changed perspectives on life and fostering deeper connections with others.

The study also revealed the importance of caregivers forming connections with individuals in similar situations, creating a sense of community and shared understanding. Despite the undeniable stress and fatigue associated with caregiving, the overall experience was deemed meaningful and rewarding by the majority of participants.

Recognizing and understanding these rewards is crucial when offering support and resources to caregivers. By acknowledging the positive aspects of the caregiving experience, we can work towards enhancing these rewards and contributing to a more positive caregiving journey for families. Whether you're in a role providing direct care or offering resources, your efforts can significantly impact the overall well-being of caregivers and those they care for.

Responsibilities

  • What roles and responsibilities do you find that aging family caregivers are balancing?

The roles and responsibilities that aging family caregivers are balancing are diverse and multifaceted. As shared in the chat, caregivers often find themselves navigating a complex web of caregiving duties, including changing care needs, mental health concerns, compound caregiving roles, day-to-day responsibilities, work commitments, and emotional and psychological demands. These various responsibilities highlight the intricate nature of caregiving. Understanding and acknowledging these challenges are crucial for developing effective support mechanisms and tailored strategies that address the specific needs of aging family caregivers. The insights shared contribute to a more comprehensive understanding of the diverse roles caregivers play and the challenges they face daily.

  • Assisting with ADLs and IADLs
  • Medication management
  • Coordination of appointments
  • Communication with providers
  • Fiduciary roles
  • Transportation
  • Seeking out and training staff

Aging family caregivers often find themselves managing various responsibilities, such as assisting with ADLs and handling IADLs, such as overseeing medication management, coordinating medical appointments, providing or arranging transportation, taking on financial duties, and training external staff members, like respite care providers. These tasks, while essential, can be time-consuming and exhausting for caregivers. Recognizing these challenges is crucial for healthcare providers to facilitate better communication and offer recommendations aligned with the realities faced by aging family caregivers. Bridging the gap between providers and caregivers through awareness and support can contribute to more effective caregiving strategies and improved overall well-being for both the caregiver and care recipient.

Themes From Aging Parental Caregivers of Adult Children With ASD

  • Day-to-day challenges
  • Physical/emotional ramifications
  • Service barriers
  • Self-care
  • Rewards

(Marsack & Perry, 2018; Marsack-Topolewski, 2020; Marsack-Topolewski & Wilson, 2021)

Family caregivers encounter numerous day-to-day challenges that have both physical and emotional ramifications. As a social worker, addressing these challenges becomes complex, especially when it comes to the physical aspects of caregiving. Working alongside occupational therapists (OTs) has proven invaluable, as they possess the skills to address issues such as the physical strain experienced by family caregivers.

OTPs play a crucial role in devising strategies to support family caregivers, particularly those in their seventies still involved in physically demanding tasks like lifting. Addressing concerns related to transfers and other physical aspects of caregiving is an area where OTPs excel, offering practical solutions and recommendations.

Moreover, the field of OT provides a platform to explore ways to mitigate the physical ramifications of caregiving. This involves not only addressing immediate physical challenges but also incorporating strategies that promote the self-care of family caregivers. By collaborating with OTPs, social workers can enhance their ability to provide comprehensive support to family caregivers, addressing both their physical and emotional well-being.

Aging Family Caregivers: Sandwich Generation Vs. Panini Press Generation

The concept of the "sandwich generation" is familiar to many, referring to individuals who find themselves caring for both aging parents and their own children simultaneously. However, Dr. Ramson's work introduces the term "panini press generation" to depict an even more challenging caregiving scenario. This term illustrates the profound strain and pressure experienced by caregivers who are stretched thin, providing care not only to aging parents but also to children, including those with lifelong disabilities like autism.

In these complex caregiving situations, individuals are pressed and challenged on multiple fronts, extending beyond the traditional understanding of the sandwich generation. The term "panini press generation" captures the intensity and thinning effect on caregivers who navigate the responsibilities of caring for aging parents while simultaneously tending to the needs of children with lifelong disabilities. These caregiving realities highlight the unique challenges faced by families in these circumstances, emphasizing the importance of tailored and comprehensive support.

Setting the Stage for Family Caregiving

  • Number of care recipients
  • Continuum of support needs (e.g., pragmatic support, activities of daily living, financial, transportation, medical, behavioral, communication)
  • Competing needs – juggling balance (workload, time factor)

(Shepherd et al., 2018)

The number of care recipients significantly influences the caregiving experience. While caregivers showcase remarkable resilience, it's crucial to be mindful of the time factors, physical demands, and emotional challenges that arise when managing care for multiple individuals. The juggling act required to balance competing needs underscores the complexity of caregiving, emphasizing the need for supportive strategies that consider the unique circumstances faced by caregivers tending to multiple care recipients. Recognizing the intricate dynamics involved in caring for multiple individuals is essential for offering effective and tailored support to meet caregivers' diverse needs.

Setting the Stage

  • Staffing
  • Employment
  • Financial
  • Pandemic implications

(Shepherd et al., 2018)

The prevalent staffing challenges within the healthcare field have a widespread impact on various stakeholders, including family caregivers, patients, and consumers. These challenges create a trickle-down effect, influencing the level of care and support available. Family caregivers, particularly those facing financial challenges, may find themselves having to forego certain resources or assistance due to these constraints. The interconnected nature of these challenges underscores the need for collaborative efforts to address staffing issues and ensure that caregivers and care recipients receive the necessary support and services despite the broader challenges in the healthcare landscape.

Signs of Caregiver Stress

  • Changes in eating habits
  • Tired and feeling run down
  • Hard time sleeping (staying asleep or falling asleep)
  • More drinking or smoking
  • Less fun/social activities
  • Hard time concentrating

(Broxson & Feliciano, 2020)

Being aware of signs of stressors in family caregivers is essential for offering timely support and recommendations. Some key signs to watch for include noticeable physical fatigue or signs of strain, especially when performing caregiving tasks, increased levels of stress, anxiety, or signs of emotional exhaustion, changes in sleep patterns or difficulty sleeping due to caregiving responsibilities, isolation or withdrawal from social activities and connections, deterioration in the caregiver's own health, including signs of neglecting personal well-being, difficulty managing work commitments and increased stress related to work-life balance, expressions of financial difficulties or strain due to caregiving responsibilities, and limited time for personal activities or self-care. Identifying these signs can guide healthcare providers in offering appropriate recommendations and support. Providing caregivers with accessible resource guides or links can serve as a valuable tool for them to access comprehensive support and accommodations when needed. Creating a universal support system can contribute to the well-being of family caregivers by addressing their diverse needs and challenges.

Signs That Caregivers Are at Risk of Burnout

  • Considerations
    • Feeling physically and mentally tired; lack of energy
    • Excessive blame – feeling like you can’t do enough
    • Irritability and impatience
    • Not take care of oneself
      • Poor sleep hygiene
      • Poor eating habits
      • Lack of exercise
      • Lack of time doing enjoyable activities

Signs of burnout in caregivers may include disruptions in sleep patterns, such as insomnia or difficulties in achieving quality sleep. Additionally, caregivers may exhibit irregular or skipped meals, neglecting personal nutrition due to the demands of caregiving. These signs offer insights into the challenges caregivers face, providing a glimpse into their daily struggles. 

Poll #2

In your work setting, what conditions are bringing patients/consumers to your care?

A) Never

B) Under 25% of patient cases

C) 25% to 49% of patient cases

D) 50% to 75% of patient cases

E) Over 75% of patient cases

It's great to see that a significant portion of participants (36%) work with family caregivers in over 75% of their patient cases. This highlights the crucial role healthcare professionals play in supporting caregivers and underscores the reciprocal relationship between caregiver support and patient outcomes. By recognizing and addressing the needs of family caregivers, healthcare providers contribute to a more comprehensive and effective healthcare ecosystem. Thank you for the important work you all do in supporting both caregivers and patients.

Poll #3

In my role, I typically work with ____?

A) No family caregivers

B) Mixed ages of family caregivers (younger and older populations)

C) Younger caregivers (e.g., new parents)

D) Aging caregivers (e.g., spouses of an aging care recipient)

E) Other

It's interesting to see the diverse experiences among participants in terms of working with family caregivers. The responses indicate a mix, with some working primarily with aging caregivers and others with a combination of younger and older caregivers. Understanding the dynamics of family caregiving across different age groups is crucial for tailoring support and interventions effectively. This recognition of the varied caregiving scenarios emphasizes the importance of flexibility and adaptability in healthcare roles to address the unique needs of caregivers, whether they are younger or older.

Caregiver Strengths

  • Committed
  • Patient
  • Resourceful
  • Innovative
  • Problem-solver
  • Strong advocate
  • Loving
  • Compassionate
  • Warm
  • Nurturing
  • Giving, community-oriented
  • Positive, encouraging
  • Strong listener
  • Resilient

The strengths and skills that caregivers bring to the table are invaluable. Working closely with families, especially those caring for individuals with developmental disabilities, provides a wealth of insights and education. The collaborative exchange of knowledge between healthcare professionals and caregivers enhances the quality of support and recommendations. Recognizing the inherent strengths of caregivers is essential for developing innovative approaches to support them effectively. Leveraging the skills and resources they possess contributes to a more collaborative and empowering caregiving experience. This mutual learning process fosters a positive and effective partnership between healthcare providers and caregivers, ultimately benefiting the well-being of care recipients.

Working With Aging Family Caregivers – Factors to Consider

  • Factors to Consider
    • Feeling physically and mentally tired; lack of energy
    • Excessive blame – feelings like you can’t do enough
    • Irritability and impatience
    • Not taking care of oneself
      • Poor sleep hygiene
      • Poor eating habits
      • Lack of exercise
      • Lack of time doing enjoyable activities

(Masefield et al., 2020).

Monitoring the emotional well-being of family caregivers is crucial, and having a temperature gauge to assess their stress levels is a valuable tool. Recognizing signs of overwhelming stress early on allows for proactive intervention and support. Addressing caregivers' emotional needs and offering assistance before they reach a breaking point is essential. Healthcare providers can play a key role in providing emotional support, resources, and coping strategies to help caregivers navigate the challenges they face. Regular check-ins and open communication contribute to a collaborative and empathetic approach to caregiver support.

Additional Factors to Consider

  • Taking a Pulse of Factors to Consider
    • Isolation
    • Sadness and apathy
    • Chronic aches and pains
    • Feeling unbalanced (work-home-other balance)
    • Avoid getting help

(Marsack & Perry, 2018)

Monitoring the emotional and physical well-being of family caregivers involves paying attention to signs such as isolation, sadness, and apathy. Chronic aches and pains are notable indicators, and healthcare professionals, particularly occupational therapists, can tailor recommendations based on these issues. Recognizing the tendency of aging family caregivers to avoid seeking help is crucial. Encouraging them to prioritize their own well-being is essential for sustaining their caregiving efforts. Collaborating within healthcare teams to address these challenges collectively and offering specialized support, such as staff members focused on caregiver support, can enhance the overall caregiving experience and alleviate some of the burdens caregivers face.

Topic 2: Unique Realities Experienced By Aging Family Caregivers

Caregiver Outcomes

  • Despite the rewards, the physical and emotional ramifications should be considered and supported for family caregivers.
    • Poorer health and quality of life (Javalkar et al., 2017; Perkins, 2010)
    • Competing demands can make self-care (e.g., routine medical appointments, adequate sleep, etc.) challenging
    • Time limitations – can make future planning very challenging

Understanding the unique realities and competing demands that family caregivers face is crucial for providing effective support. Research on family caregiving outcomes highlights the impact on both physical and mental health, as well as overall quality of life. Your personal experience with an occupational therapist regarding your child's feeding issue exemplifies the importance of tailoring recommendations to the specific circumstances and challenges faced by caregivers. Recognizing the constraints and competing demands allows healthcare professionals, including occupational therapists, to collaborate with caregivers and create realistic and achievable strategies. This approach ensures that the recommendations align with the caregivers' capabilities and ultimately contribute to better outcomes for the care recipients.

Factors, Characteristics, and Caregiver Outcomes

  • The realities of caregiving impact caregiver outcomes
    • Factors
    • Characteristics of caregiver
      • Health
      • Time factors
      • Appraisal and caregiver burden (e.g., time, emotional, financial burden)
    • Characteristics of a care recipient(s)
      • # of care recipients
      • Living arrangement
      • Social support
      • Care needs and realities

Factors influencing caregiving challenges are multifaceted and include the number of care recipients, characteristics of the caregiver (age, health, recharge time), cognitive appraisal, and caregiver burden. Caregiver burden encompasses time dependence, emotional impact, and financial stress. The living arrangement of the care recipient is another critical factor, with families experiencing different stress levels based on whether the care recipient lives with them or elsewhere. However, even if the care recipient is not physically present, the caregiver may still face demanding responsibilities, such as coordination of care, advocacy, and providing emotional support. Understanding these factors helps tailor support and recommendations to the unique circumstances of each caregiving situation, ensuring more effective and realistic assistance for caregivers and better outcomes for care recipients.

Poll #4

When interacting with family caregivers, how often do they disclose feelings of burnout or personal stressors?

A) Rarely

B) Sometimes

C) Frequently

D) Never

E) I do not intersect with family caregivers in my role.

Understanding how frequently family caregivers disclose feelings of burnout or personal stressors is crucial for tailoring support and resources effectively. The poll results indicate that a significant proportion of respondents (around 35%) frequently encounter caregivers sharing these challenges, while others note that it happens sometimes. Recognizing the frequency of these disclosures allows for proactive measures, such as developing resources within the organization or finding more time-effective ways to share information and support with caregivers. This acknowledgment of caregiver needs can contribute to a more comprehensive and responsive healthcare approach, ensuring caregivers receive the necessary assistance while considering the constraints of the professionals involved.

Topic 3: Ways to Support Aging Family Caregivers

Considerations & Implications for Practitioners

  • Develop rapport
  • Framing our “asks”
  • Setting realistic expectations
  • Sense and gauge caregiver availability and bandwidth
  • Resource and support options recommendations and referral

The importance of developing rapport with family caregivers cannot be overstated, as reflected in the poll results indicating that caregivers often share their stressors and burnout experiences. Establishing rapport involves sensitively assessing factors such as available time, abilities, and support systems of caregivers. Recognizing the diversity in how caregivers perceive recommendations is crucial. While some may find certain tasks virtually impossible, others may attempt to integrate recommendations but face challenges due to a lack of reinforcement or support. Setting realistic expectations, understanding availability, and providing appropriate resources and support are key components of effective caregiving. Additionally, acknowledging the support caregivers receive from other family members or unpaid caregivers is essential in creating a comprehensive and responsive care environment.

Social Support

  • Informal
    • Unpaid support
      • Family, friends,
      • Neighbors
  • Formal
    • Paid support
      • Organization
      • Agency support

The significance of informal social support or unpaid networks, comprising family, friends, neighbors, care recipients, and patients, cannot be overstated. Leveraging these networks, when possible, is crucial for creating a supportive environment. Family-led opportunities, such as family support navigator models or caregiver-led support groups, can offer valuable support without the involvement of professionals. These informal social supports often play a vital role, especially in times of medical crises, and can be powerful resources for caregivers. Exploring and enhancing these informal networks can contribute significantly to the well-being of family caregivers.

Supporting Family Caregivers

  • Education
  • Learn about and access resources
  • Family support navigator or peer support models
  • Support building and maintaining positive relationships
    • Support groups
    • Informal support networks
    • Formal support networks
  • Mindset

Supporting aging family caregivers involves providing education, leveraging unique occupational therapy skills, and offering resources. Family support navigator models, like peer support navigators, can be powerful in delivering support to caregivers in various settings. These models help caregivers understand aging services, disability support, and health services. Additionally, building and maintaining positive relationships is crucial, considering the reciprocal nature of caregiver and patient well-being. Adopting a positive mindset, using inclusive language, and providing support from the worst days can contribute significantly to the overall support system for family caregivers.

Offer Practical-Oriented Support

  • Recognize signs of frustration, agitation, and stress.
  • Know when to take a break.
  • Know how to take a break.
  • Set a timer on your phone as a reminder to take breaks and use self-care strategies.

Here are some ways to offer practical support as a resource if these can be of help to your family caregivers.

Simple Strategies

  • “I learned to identify in myself very simply [that] if I had lost my sense of humor, it was time for me to sit out and take a break.”
    • Quote from an aging parent of an adult child with autism spectrum disorder*

(Marsack-Topolewski & Wilson, 2021)

Humor indeed can be a powerful coping mechanism for family caregivers. Recognizing the importance of maintaining a sense of humor and incorporating it into strategies can contribute to the overall well-being of caregivers. 

Develop Realistic and Coordinated Plans

  •  “An hour of planning can save you ten hours of doing.” 

-Dale Carnegie

The quote from Dale Carnegie emphasizes the value of planning, and it holds true in various aspects of life, including caregiving. Helping family caregivers develop realistic and coordinated plans can significantly contribute to managing their responsibilities more efficiently. Whether it's preparing for the day ahead or organizing tasks to reduce stress, thoughtful planning can make a substantial difference. 

Choosing & Accessing Resources

Steps

Considerations

Awareness of resources

•Know what is needed
•Know what services and supports can be sought from specific organizations
•Know where to go/contact person or organization

Connecting with and accessing resources

•Connect with organizations for support and services (use phone, email, face-to-face contacts)
•Service navigation can be time-intensive and challenging
•Maintain contacts and record logs
•Follow up as needed

Advocating and developing resources

•Develop resources and innovative support options
•Utilize the support of a team

Having a guide for choosing and accessing resources is valuable, especially considering the diverse settings and responsibilities of professionals like yourself. It's essential to tailor the approach based on individual situations and needs. If you have specific points or areas within this guide that you'd like to delve into or discuss further, feel free to let me know. 

Using Self-Care to Prevent Burnout & Promote Well-Being

Promoting self-care is crucial for family caregivers, and starting with small, realistic steps is a great approach. Simple practices like preparing a water bottle the night before or using sticky notes for reminders can make a significant difference. If you have specific strategies or areas related to self-care, again, feel free to let me know, as I'm here to assist you!

Summary

Recentering ourselves, I would like to wrap up with the learning outcomes. I wanted participants to be able to identify the rewards, responsibilities, demands, and challenges experienced by aging family caregivers. The next was to recognize the unique realities experienced by our aging family caregivers. There are a lot of different situations and realities depending on the situation. Lastly, I wanted you to be able to list strategies and opportunities to support our family caregivers and family members in these aging years so that they can provide care to loved ones receiving occupational therapy.

We will now look at some of the exam questions via polling.

1) What is a compound caregiver?

It's evident that many participants grasped this concept accurately. Indeed, a compound caregiver, denoted by B, is an individual who initially serves as a caregiver for someone with a developmental disability and subsequently takes on the responsibility of caring for another person. This situation is prevalent across various regions and settings. The intricacies of juggling dual caregiving roles make it a complex endeavor for those involved. Compound caregivers navigate through diverse challenges and responsibilities as they fulfill their caregiving roles, highlighting the multifaceted nature of their experiences.

2) What is a reward of caregiving?

The reward of caregiving encompasses a broad spectrum, as correctly identified by most of you, and includes all of the above options. Family caregivers consistently express a sense of pride in witnessing the progress and growth of their care recipients. Additionally, feelings of personal competence arise when caregivers successfully advocate for essential supports and services. The depth of connection with others, sometimes extending to a profound sense of humanity and empathy, further contributes to the rewarding nature of caregiving. It's crucial to recognize and appreciate these positive aspects amid the challenges and demands associated with caregiving responsibilities.

3) Which of the following is NOT a sign of a stressor in aging family caregivers?

That is correct. A vibrant social life is not typically considered a sign of a stressor in aging family caregivers. The identified stressors often include difficulties concentrating, feelings of tiredness and being run down, and challenges with sleeping. Recognizing these signs can be crucial in understanding the stressors faced by aging family caregivers and providing appropriate support and interventions to address their needs. It's essential to acknowledge the importance of strategies and structures that can help alleviate stress and improve overall well-being for caregivers.

4) What is a way to support family caregivers?

Absolutely, providing support to family caregivers involves a multifaceted approach, and all of the options listed (providing education, supporting building and maintaining positive relationships, and accessing resources) contribute to a comprehensive strategy. Recognizing the diverse needs of family caregivers and tailoring support to their unique situations is essential. It's important to have a flexible and individualized approach to ensure that caregivers receive the assistance and resources that best meet their specific challenges and requirements.

5) Which is NOT a characteristic of a positive coping strategy?

The answer is complex. We want to provide solution-focused, easy, and realistic strategies.

In situations where the elderly have no adult caregivers, it indeed presents a significant challenge. Many older adults face the risk of isolation and potential gaps in the support they receive. Community-based programs, local organizations, and initiatives like volunteer services can play a crucial role in providing assistance to older adults who lack adult caregivers. Additionally, exploring opportunities for creating support networks within the community can contribute to enhancing the well-being of elderly individuals without immediate family caregivers. This might involve collaborations between local agencies, nonprofits, and community volunteers to address the unique needs of this population.

Thanks for your attention today.

References

AARP and National Alliance for Caregiving. (2020, May). Caregiving in the United States 2020. AARP. https://doi.org/10.26419/ppi.00103.001  

Bennett, S., Laver, K., Voigt-Radloff, S., Letts, L., Clemson, L., Graff, M., ... & Gitlin, L. (2019). Occupational therapy for people with dementia and their family carers provided at home: a systematic review and meta-analysis. BMJ open, 9(11), e026308.

Javalkar, K., Rak, E., Phillip, A., Haberman, C., Ferris, M., & Van Tilburg, M. (2017). Predictors of caregiver burden among mothers of children with chronic conditions. Children, 4(5), 1–10. https://doi.org/10.3390/children4050039

Marsack, C. N., & Perry, T. E. (2018). Aging in place in every community: Social exclusion experiences of parents of adult children with autism spectrum disorder. Research on aging, 40(6), 535-557.

Marsack‐Topolewski, C. N., Perry, T. E., & Chan, K. T. (2021). “I'm glad she chose me as her parent”: Rewards of caregiving for adults with autism. Family Relations, 70(5), 1465-1476.

Marsack-Topolewski, C. N. (2020). A snapshot of social support networks among parental caregivers of adults with autism. Journal of Autism and Developmental Disorders, 50(4), 1111-1122.

Marsack-Topolewski, C. N. (2022). Predictors of quality of life for aging family caregivers of adults with autism. Journal of Family Social Work, 25(2-3), 109-125.

Marsack-Topolewski, C. N., Samuel, P. S., & Tarraf, W. (2021). Empirical evaluation of the association between daily living skills of adults with autism and parental caregiver burden. Plos one, 16(1), e0244844.

Marsack-Topolewski, C. N., & Wilson, K. P. (2021). Coping strategies used by aging parental caregivers of adults with autism spectrum disorder. Families in Society, 102(1), 119-132.

Perkins, E. A. (2010). The compound caregiver: A case study in multiple caregiving roles. Clinical Gerontologist, 33(3), 248–254. https://doi.org/10.1080/07317111003773619

Womack, J. L., Lilja, M., Dickie, V., & Isaksson, G. (2019). Occupational therapists’ interactions with older adult caregivers: Negotiating priorities and expertise. OTJR: Occupation, Participation and Health, 39(1), 48-55.

Yong, A. S. L., Price, L., Napier, F., & Matthews, K. (2020). Supporting sustainable occupational lives for partner caregivers of people with dementia. British Journal of Occupational Therapy, 83(9), 595-604.

Citation

Marsack-Topolewski, C. (2023). Aging caregivers: What to know and how to best provide support. OccupationalTherapy.com, Article 5680. Available at www.occupationaltherapy.com

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christina marsack topolewski

Christina Marsack-Topolewski, PhD, MSW, LMSW

Dr. Christina Marsack-Topolewski is an associate professor of Social Work in the College of Health and Human Services at Eastern Michigan University. She received a bachelor of science in Special Education from Wayne State University, specializing in Cognitive Impairments. She trained under a specialized fellowship at the University of Michigan, receiving her master’s in Social Work and specializing in aging from the University of Michigan. Dr. Marsack-Topolewski received her PhD in Social Work with a dual title in Gerontology from Wayne State University. She has worked with individuals with various intellectual and developmental disabilities for over 20 years. Her research focuses on individuals with IDDs, their caregivers, advance care planning, service delivery, and service utilization. She has over 50 publications in national and international journals, mainly focusing on individuals with IDDs, advance care planning, caregiving, and aging. In addition, she has presented her work locally, nationally, and internationally. Dr. Marsack-Topolewski has led multiple grant-funded programs tailoring services to individuals with IDDs, older adults, and chronic illnesses. In 2019, she was appointed to the National Task Group on Intellectual Disability and Dementia Practices. She serves as both a board member and co-chair of Membership Affairs. Over the past three years, she has provided testimony at the state level (Michigan) to advocate for two house bills that would provide protections against exploitation for vulnerable adults, such as individuals with IDDs.



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