Navigating the holidays when you’re a caregiver for a loved one living with dementia

The holidays bring friends and family together for celebrations and the chance to reconnect with people we may not see regularly during the rest of the year. But for people who are the caregivers for a parent, spouse, partner, or other family member who is living with Alzheimer’s disease or other forms of dementia, the holidays can be more complicated.

Beyond the stress of continuing to provide care during an especially busy time of year and striving to maintain consistency and calm for the person with dementia to minimize the possibility of increased agitation, anxiety and confusion, caregivers are often faced with surprise and concern from family members and others about the progression of dementia symptoms. This can, unfortunately, lead to tense conversations and friction between family members.

It’s a scenario that is increasingly common as the U.S. population ages and the number of people who are living with dementia grows. According to statistics gathered by the Alzheimer’s Association, in 2019 an estimated 5.8 million Americans are currently living with Alzheimer’s disease and a new study from the Centers for Disease Control and Prevention projects that the number of people affected by Alzheimer’s disease and related dementias will reach 13.9 million, nearly 3.3 percent of the country’s population, in 2060.

Living in the new normal

Although family members and others who don’t have frequent contact with the person with dementia may be concerned that the progression of symptoms means that the caregiver isn’t doing enough to ensure that the disease is being adequately managed, most often that’s not the case. In some cases, caregivers aren’t fully aware of how much the disease has progressed because they are immersed in a new normal — an intense day-to-day life in which they are focused on providing care, scheduling and attending physician’s appointments, refilling prescriptions and managing the many other tasks the person with dementia can no longer handle, such as paying bills, housekeeping, shopping, preparing food and caring for the home. These extra responsibilities are often added on to their own family and work obligations.

The key to preventing family members’ concern and criticism is to open and maintain lines of communication between caregivers and family members. While some caregivers are loath to share these details out of respect for the person with dementia’s privacy, keeping family members apprised of the progression of the disease is key. While this may seem at first glance to be relatively simple, it can be another task added to the to-do list of an already overtaxed caregiver. In addition, family dynamics are often complex, further complicating this type of sensitive communication.

An objective source of support

Geriatric care managers, nurse case managers, and other objective advisors can facilitate communication and provide the other types of support that caregivers, patients, and families need as they live with the many ways that a dementia diagnosis impacts their lives. These professionals serve as an objective resource and problem solver, providing a wide range of types of support that may include:

  • Bringing family members together and explaining the dementia diagnosis, possible prognosis, and treatment options.
  • Connecting patients with physicians to manage not only their dementia but also any other chronic conditions or serious diseases they face and scheduling and attending appointments with the patient and caregiver to take notes and ask questions.
  • Developing and communicating action plans to deal with any health or psychological crises that may arise as a result of the progression of dementia.
  • Reviewing and consolidating medical records so that all treating physicians have a complete understanding of the patient’s current health issues and health history.
  • Researching treatment options, medications, and, if needed, care facilities.
  • Assisting with the creation or updating of powers of attorney, advance directives, and other key documents that caregivers need.

The final piece of the support strategy is one that’s often overlooked — caring for the caregiver. Care managers and advisors also provide much-needed support to caregivers who often put their own health needs on the back burner because they’re overwhelmed with the needs of their loved one. This support can take many forms, including connecting caregivers to respite care resources and community support groups and scheduling regular health care and screening appointments such as annual physicals and recommended cancer screenings.

Miles J. Varn is chief executive officer, PinnacleCare, and can be reached on LinkedIn.

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