It’s vitally important to support caregivers and pay
attention to their needs, as they are the backbone of
many families living with chronic disease. Their
perspective is valuable in many respects. As the closest
and most constant observer of their loved one, a
caregiver has first-hand knowledge of their challenges,
symptoms, and the effectiveness of treatment. His or
her knowledge of side effects, as well as physical or cognitive changes, and how these affect
functioning and quality of life is relevant and crucial in both the healthcare and research settings.
In MS, the role of the caregiver is constantly changing. When a person with the disease is in
remission, there may be less caregiving required, whereas if they are in the middle of a relapse
or have advanced disease, caregiving may be a round-the-clock requirement.
As MS caregivers
are generally unable to anticipate the onset of a relapse, the progression of the disease, or even
the functional ability of their loved one over the course of a day, the resulting ups and downs
can be stressful and draining for everyone. Those providing support are often so focused on
their partner’s needs they may not have time to take care of their own. In this situation, over a long period of time, it’s conceivable that MS caregivers could become second victims to the
disease. All of these things have dire consequences for administering care.
iConquerMS continues to expand its research collaborations to
include caregivers to those living with MS, in hopes of easing their
burdens and improving MS research in the process. In 2019, ACP
partnered with UsAgainstAlzheimer’s to apply for a grant from
Genentech aimed at advancing health equity in patients with
neurologically based diseases. With this support, the organizations
developed two surveys to learn more about the challenges that caregivers face and their
relationships with healthcare providers. Recognizing that there are features that are unique to
providing care to someone with MS compared with Alzheimer’s disease, questions focused on
the common ground between the two conditions. These surveys were sent out to both
communities, with very interesting results, which are summarized below.
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