Lucille Carriere, PhD is the Behavioral Health Director and Angie Ruvo Endowed Caregiving Chair at Cleveland Clinic. She has worked in geriatric primary care and provided psychotherapy for individuals and caregivers living with neurodegenerative disorders and complex medical conditions, and she is interested in outcomes research related to caregivers. Dr. Carriere discussed with us the emotional and physical realities of being a caregiver.
Read the Q&A with Dr. Carriere below.
WAM: 3 out of 4 Americans over the age of 50 say they want to “age at home” or remain in their current home as long as possible. What does caregiving at home look like?
Dr. Carriere: Nearly 40% of family caregivers (not dementia-specific) report caring for a loved one in their home. These family caregivers endorse significant worries about modifications needed to keep their loved one safe while ‘aging at home.’ Rehabilitation therapies for individuals living with dementia can be beneficial in identifying those safety needs, while also supporting appropriate independence. Caregivers may benefit from technology (cameras, monitoring systems, etc.) to support safety and independence. Additionally, many communities have programs for older adults to assist with home modifications.
WAM: When you’re involved in giving a diagnosis of Alzheimer’s or dementia, how do you prepare families for what’s ahead? For many, assisted living in a facility isn’t personally desirable or a financial option, so what do they need to know going in?
Dr. Carriere: As a mental health provider, I primarily focus on ‘unpacking’ the meaning and emotional impact of the diagnosis and prognosis. I may initiate this process with a family discussion to understand the unique impact of the diagnosis on each family member, and related, future planning. I am mindful that each family member may have different educational and support needs; therefore, time spent discussing these individual needs aids in the selection of thoughtful resources. Otherwise, I may unintentionally overwhelm the family with too much information or resources and heighten stress levels.
While I am always ready to provide reputable resources to aid in future planning, I ultimately take the family’s lead in where we start the discussion.
WAM: An estimated 11 million Americans today provide unpaid care for loved ones with dementia or Alzheimer’s, with the majority (65%) being women. What do we know about the toll caregiving takes on people financially, physically and emotionally, and are there things that may be different for men and women caregivers?
Dr. Carriere: Dementia caregivers are at increased risk for depression, anxiety, and burden compared to non-dementia caregivers (stroke, cancer, etc.) as it relates to their caregiving duties. Traditionally, dementia caregivers have rated their physical health as poor and endorse higher rates of pain. Connection between poor physical health and caregiving may relate directly to caregiving-specific injuries, or less directly to delays in preventative medical care and treatment for caregivers.
According to the 2021 Alzheimer’s Disease Facts and Figures report, the estimated total lifetime cost of care for someone with dementia is $373,527 (in 2020 dollars).
Prior research has generally found that female dementia caregivers experience higher rates of depression, stress, caregiver burden, and poor physical health compared to male dementia caregivers. Although we don’t yet understand the reason for sex differences in caregiving outcomes, some researchers have suggested male caregivers may be more likely to seek and accept help sooner in the disease process and utilize respite services.
In addition, female caregivers tend to provide more direct (‘hands on”) caregiving tasks than male caregivers, and this may relate to differences in social roles for males and females.
WAM: How has Covid affected caregivers?
Dr. Carriere: The COVID-19 pandemic drastically affected the health and wellness of individuals living with dementia and their caregivers. Caregivers were particularly worried about their loved one contracting the virus during the pandemic, particularly with increased health risks associated with dementia. To limit potential transmission (even amongst family units), family caregivers significantly altered their loved ones’ daily routines, socialization, and recreational activities. Caregivers also experienced gaps in respite or in-home caregiving assistance at the beginning of the pandemic due to heightened concerns for transmission. Consequently, family caregivers were more likely to assume greater caregiving tasks and related, experience higher rates of stress and caregiver burden.
WAM: What are your top tips for caregivers to help them avoid burnout?
Dr Carriere: I strongly emphasize the benefits of building and maintaining social connections early in the journey as a family caregiver. Connections offer opportunities for increased support, problem-solving, and opportunities for positive experiences – all of which may be limited as the demands of caregiving increase. If other family caregivers are not already part of established social networks, I encourage caregivers to consider trying out a caregiver support group or skills class to increase connections with other caregivers that are intimately familiar with the caregiving journey.
I also strongly recommend learning more about the disease process – whether through self-guided educational materials (books, websites), webinars, or attending a caregiver skills course. Education and disease knowledge help set expectations for the caregiving journey.
The key aspect is to learn at your own unique pace and educational needs. Some caregivers prefer to know about future (or anticipated) cognitive or behavioral changes in their loved one, while others prefer to focus on understanding and managing current changes observed in their loved one. Reflect on your own needs or potential gaps in knowledge. Your loved one’s treatment team is a great source of knowledge and support for you.