Caring for the Caregivers

Caregivers are significant players in the healthcare ecosystem and, for many individuals, a necessary aspect in managing an illness or chronic condition. While traditionally neglected, the role of the caregiver in the delivery of healthcare services is gaining more recognition as we begin to understand their needs as they navigate caring for an individual. Increasingly too, pharma companies are acknowledging the importance of caregivers in supporting optimal patient self-management, especially with regard to medication adherence.

What, exactly, does it mean to be a caregiver? The term describes a broad range of situations whereby a designated individual, often a family member, is responsible for looking after aspects of another individual’s health and well-being. Caregiver can describe individuals who may be looking after a child living with diabetes, a spouse living with cancer, or an older parent living with dementia. While each caregiving role presents its own unique challenges, there are commonalities, and caregivers often express similar needs and experience similar challenges.

Caregiving is Complex and Dynamic

The role that a caregiver plays is often determined by the cognitive and physical capabilities of the individual who is being cared for. This is not typically static, and the role of the caregiver can change over time as the care recipient moves through life stages or moves through a disease process. Caregivers need to be flexible, adapting to their roles to accommodate the changing needs of the care recipient.

The role of the caregiver can be relatively discrete and limited. It may involve only a few tasks focused on disease management, such as coordinating medical appointments and supporting medication adherence. In other situations, however, the caregiving role can be all consuming, leaving little time for the caregiver to engage in activities outside of their caregiving role. For example, the caregiver may be involved in disease management activities and also responsible for supporting many of the activities of daily living, such as personal hygiene, dressing, and eating.

Ultimately, regardless of the tasks involved, most caregivers indicate that caregiving causes high levels of stress, particularly in the relationship the caregiver has with the care recipient. Caregivers are typically unequipped to deal with this stress, and when asked about caregiving goals, often seek to reduce anxiety levels for both themselves and the person they care for.

Taking Shared Responsibility

The relationship between an individual and their caregiver is at the forefront of a successful caregiving partnership. Many variables are at play in the dynamics of this relationship. In an ideal situation, the individual and caregiver work as partners with active participation from each person. This scenario can quickly become complicated by a perceived lack of independence, failing physical health, decreased cognitive ability, or a difference in opinion within the partnership. A shift in primary responsibility of a caregiver to an adolescent approaching adulthood is another complex scenario. Challenges can also arise when the caregiver must balance the responsibilities of acting as a proxy for the patient’s voice and an independent entity willing and able to make decisions in lieu of patient input.

What is Necessary at All Stages of the Role

Irrespective of how one comes into their caregiving role, research demonstrates that, despite the condition and the circumstance, the large majority of caregivers search for information across the duration of their time as a caregiver. Information and support is not something that is only sought out at the beginning of the caregiver journey. On the contrary—even caregivers who consider themselves “experts” report seeking ongoing education and support. Much of the information sought by caregivers relies on the quality of the relationship with a HCP.

Being a caregiver typically requires becoming a subject matter expert in a specific medical field, whether it is diabetes, cancer or Alzheimer’s disease. Caregiving can also demand the development of new skills that relate to disease management such as blood testing, giving injections, and medication management. Though caregivers access and use many information sources, HCPs are primary sources of information and support. Good communication between the caregiver and the HCP is thus pivotal in ensuring that the caregiver acquires the knowledge and skills required to provide effective care.

Support the HCP to Support the Caregiver

Adding a caregiver to the patient/physician dynamic can present an interesting challenge. It can be easy for the HCP to focus on either the patient, at the expense of the caregiver, or on the caregiver at the expense of the patient. Building a successful, reciprocated communication relationship between the caregiver, patient, and HCP is not always easy. It takes time and skill to develop the type of open, trusting relationship that is most beneficial. Once in place however, it enables the responsibility for quality communication to fall equally across all stakeholders. In turn, a focus on shared decision-making means less stress on any one member of the trio.

Behavioral science holds several keys to improving communication between the caregiver, patient, and HCP. Appreciating the limited time of HCP interactions, one approach can be to provide HCPs with communication dialogue tools to support collaborative interactions with patients and caregivers. These tools can include brief assessments containing only a few questions that elicit both the perspective of the patient and caregiver. Such tools can yield a plethora of valuable information that the HCP can integrate and then offer personalized support to address patient and caregiver need.

We know that good communication leads to quality relationships. Caregivers and patients are more likely to follow the guidance of a physician with whom they feel they have a good relationship. Developing a strong communicative relationship in a triad—caregiver, patient, and physician—may be more complex, but it can also yield a greater reward. Focusing on the dynamic in this “interactive triangle” will better educationally and emotionally support caregivers, and in turn, enable caregivers to better support the people they care for.

  • Laura Moore, EdD, CHES

    Laura Moore, EdD, CHES is Lead Health Psychology Specialist at Atlantis Healthcare. Dr. Moore has 20 years of experience creating innovative health education initiatives targeting children and adults living with chronic illness. Her expertise combines a thorough understanding of psychosocial issues, health psychology models, and epidemiology to build programs that promote behavior change.

    • Kate Perry

      Dr. Kate Perry, MSc, PsychD, MNZPB is Director, Behavioral Science at Atlantis Healthcare. A registered psychologist with 20 years experience in the healthcare sector, Dr. Perry is responsible for the development of global evidence-based programs to promote behavior change among individuals living with chronic conditions.

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