Family caregivers are indispensable to the healthcare system, providing essential support for individuals with serious illnesses or disabilities. These caregivers often take on complex and demanding roles, managing everything from daily living activities to medical procedures, medications etc. The significance of their contributions is undeniable, yet the challenges they face are immense. As the population ages and the prevalence of chronic illnesses rises, the reliance on family caregivers is expected to grow, making it crucial to explore ways to support them effectively. This is even more notable for special populations that rely on caregivers in adulthood including individuals with intellectual and developmental disabilities (I/DD), chronic health conditions and serious mental illness/serious and persistent mental illness (SMI/SPMI).
Caregiving, while fulfilling, can be physically, emotionally, and financially taxing; especially for family members who serve multiple roles (e.g. "dad" + personal care attendant). Caregivers frequently experience physical strain from tasks such as lifting and moving loved ones, leading to injuries and chronic pain. Emotionally, the constant demands and the stress of managing a loved one's health can lead to burnout, anxiety, and depression. We know from our own experience that caregiving is not only a full time job, but can also limit caregiver's ability to maintain employment at all. Financially, caregivers often incur out-of-pocket expenses for medical supplies, home modifications, and lost income due to reduced work hours or job loss. Considering the human impact of these multifaceted challenges on caregivers is essential for developing family and caregiver support systems.
Given funding limitations and scope of covered benefits etc.; family support should be inherent in publicly funded health systems. Every person in care has or at least comes from a family. Which creates a tremendous opportunity to engage patients/clients/people about their support systems, recognizing that family is not limited to blood relatives. While not all families are supportive, a vast majority of people have at least one person they rely on, who knows their history, needs and what works best for their loved one when navigating care.
Once family/natural supports are identified, go the extra step and ask if the person is willing to include them in care now; or if at least their family/natural support can be included in an advanced directive to jump in should the patient/client/person not be able to make decisions for themselves.
With consent, outreach the family and ask them to provide insight into the individual's needs - including history, strengths etc.. If they are willing and able to participate in the assessment and treatment planning, include them to the greatest extent possible. Every time that person leaves your clinic/hospital; they are going home to their family. Building a strong family alliance is essentially to truly 'wrapping' people in care.
Make it common place to reach out to family members and get feedback on what's going on in the person's life; if the family members have any rising concerns or observations that warrant follow up etc.
Provider training and family support partners to coach family members how to support their loved ones - based on their specific diagnoses and treatment plans. Offer family therapy with or without the client present; facilitate support groups, family engagement events and outings; design clinical support programs specific to family members to prevent and address compassion fatigue, secondary trauma, direct truama, and burn out. We aren't helping patients/clients/people by allowing their natural supports to burn out and no longer be available to them.
Numerous innovative practices are being developed to reduce the burden on family caregivers. Arizona Medicaid piloted a Family as Caregivers program that offered financial reimbursement for family members who provide direct care attendant care for their loved ones. Respite is a game changer for caregivers of those with I/DD conditions; but is lacking for caregivers of loved ones with chronic health condition or SMI/SPMI. There is also significant opportunity to make navigating healthcare easier. In a time of limitless technology, county, State and managed care regulators should consider dramatically increasing resources on their websites, and within their member mobile applications and portal to include
We have the tools, technology and resources needed to immediately connect loved ones to the support they need it WHEN they need it and drastically reduce the burden on Providers and caregivers.