Alzheimer’s Disease: The Challenges Family Caregivers Face

By Nolan Brown
Marketing Intern, Butler University

The term “dementia” is used to describe the loss of memory and other thinking abilities, and Alzheimer’s disease is the most common type, making up 60 to 80% of all dementia cases. During Alzheimer’s and Brain Awareness Month this June, VMS BioMarketing wants to recognize all the dedicated healthcare providers (HCPs) on the front lines fighting Alzheimer’s and other dementias.

One group of people who are also on the front lines and are not praised enough are the family caregivers of people with dementia.

These caregivers – who may be relatives, other loved ones, or close friends – take on caring for people with Alzheimer’s across the country every day, often without much or any training. This disease is the number one illness faced by caregivers of patients over 65 according to the 2020 Caregiving in the U.S. study by the National Alliance for Caregiving. They face the emotional impact of handling a family member’s decline, the financial hardships caused by dementia, and the day-to-day aspects of the patient’s life. Between communication, hygiene, meals, and more, the burden of caregiving can be overwhelming. According to a study on caregiver burden published in the International Journal of Psychiatry in Medicine, more than half of caregivers experience symptoms of anxiety and depression. The study also found that anxiety and depression in caregiving are directly connected to two factors: first, the length and severity of the patient’s Alzheimer’s, and second, a lack of clinical, social, and psychological support.

As dementia progresses, caregivers often require additional support to maintain their own health and the care they are providing the patient. The memory loss and confusion that comes with dementia will only increase over time, and family caregivers may not be able to handle this challenge on their own. One of the most important aspects of caring for someone with Alzheimer’s or other dementia is knowing when to ask for help. Asking for help is sometimes difficult but doing so shows strength. Alzheimer’s caregivers need a strong support system for themselves and their loved one, and they can often receive that support in these different ways:

1. Health care providers – the patient’s primary and specialty care providers are the first line of support for patients and their caregivers. It’s important to keep contact information for all the patient’s healthcare providers in an easy-to-find location.
2. Clinical nurse educators (CNEs) – these highly trained HCPs can provide expert education and point the way to even more resources. CNEs may be available through the HCP offices, or they might also be available through a pharma company or specialty pharmacy that provides access to the patient’s medication. 
3. Support groups – organizations such as the Alzheimer’s Association have a wide range of resources including in-person and virtual support groups. The Centers for Disease Control also has resources such as a plan for caregiving that can be downloaded here. 

With 20 million home caregivers in the U.S performing sometimes complex healthcare tasks such as giving injections, preparing special diets, handling tube feedings, and dealing with specialized equipment often without training, could the pharma industry do more? In a recent PM360 article, Abigail Mallon, SVP, Strategic Account Management & Chief Compliance Officer at VMS BioMarketing, said “This could be a perfect gap for manufacturers to fill. During the process of onboarding new patients to a new therapy, educational sessions could be directed specifically toward caregiver training along with follow-ups to answer questions that arise and ensure that instructions are performed according to prescribers’ orders.” Other suggestions include proactively connecting caregivers to resources for support and providing tools for stress management.

Alzheimer’s caregivers have one of the most difficult jobs, and it will likely increase in difficulty as the disease progresses. With the number of aging Americans continuing to rise, more and more will be put on the shoulders of Alzheimer’s caregivers. As a healthcare industry, let’s find more ways to support caregivers and identify more opportunities to educate and empower them.

Sources
Caring for the Caregivers: How Biopharma Can Lend a Helping Hand — PM360
Caregiving in the U.S. 2020 Report — The National Alliance for Caregiving
Getting Help with Alzheimer’s Caregiving — The National Institute on Aging
What is a Support Group — The Alzheimer’s Association
Alzheimer’s Caregiving: Day-to-day Challenges — Harvard Health
Anxiety and Depression in Caregivers — The International Journal of Psychiatry in Medicine