Navigating the holidays when a loved one has dementia

December 17, 2019 in Family Caregiving  •  By Miles Varn, MD

For people who are the caregivers for a parent, spouse, partner, or other family member living with Alzheimer’s disease or other forms of dementia, the holidays can be complicated.

First, there’s 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. In addition, caregivers are often faced with surprise and concern from family members and others who don’t regularly see the person with dementia about the progression of symptoms. This can lead to tense conversations and friction.

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. In 2019 an estimated 5.8 million Americans are currently living with Alzheimer’s disease according to the Alzheimer’s Association. 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 in 2060.

The new normal

Family members and others who don’t have frequent contact with the person with dementia may be concerned that the progression of symptoms means the caregiver isn’t doing enough to ensure that the disease is being adequately managed. However, most often that’s not the case. Sometimes caregivers aren’t fully aware of how much the disease has progressed because they’re immersed in a new normal—an intense day-to-day routine in which they’re focused on providing care, scheduling and attending doctor’s appointments, refilling prescriptions, and managing the other tasks the person with dementia can no longer handle, such as paying bills, housekeeping, shopping, preparing food, and caring for the home. All of 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 hesitant to share these details out of respect for the person with dementia’s privacy, keeping family members in the loop about the progression of the disease is key.

At first glance, this might seem to be relatively simple. But 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 other types of support that caregivers, patients, and families need. 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
  • 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

Caring for the caregiver

The final piece of the strategy is one that’s often overlooked—caring for the caregiver. Caregivers often put their own health needs on the back burner because they’re overwhelmed with the needs of their loved one. Care managers and advisors can connect caregivers to respite care resources and community support groups, as well as scheduling regular healthcare and screening appointments such as annual physicals and recommended cancer screenings.

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