Dementia Caregivers Face Communication Challenges
It is estimated that 5.4 million Americans have Alzheimer's disease and are being cared for by nearly 15 million unpaid caregivers—including family, friends, partners and neighbors. Eighty percent of at-home care for people with Alzheimer's or other dementia is provided by family caregivers, and it is often the equivalent of a full-time job for them.
A new survey by the National Family Caregivers Association (NFCA) reveals what these family caregivers fear most—first, their loved one's physical decline; and second, that Alzheimer's will take away their loved one's ability to communicate. The survey found that communication decline is a major source of stress, and also interferes with caregivers’ ability to fulfill their responsibilities as a caregiver.
NFCA president Suzanne Mintz confirms that caregiving is incredibly stressful and can be very lonely and isolating, particularly when Alzheimer’s disease takes away a loved one’s ability to communicate effectively. Caregivers must improvise and find new ways to connect with their loved ones, whether it is on an emotional level or discussing practical matters.
Conversations about emotions, medical decisions, sleep disturbances, personal hygiene and medications are the most difficult, reported the survey participants. More than half said they are unable to communicate effectively on these issues. As a result, many report decreasing their attempts at two-way communication with their loved ones.
Despite the difficulties, the caregivers reported that they have adopted new ways of communicating with their loved one, including observing the person’s facial expression and body language, and using pictures.
Family caregivers also serve as an important source of information for their loved one’s healthcare team. They are the ones who typically see the disease progress before their eyes. It becomes one of their many responsibilities to keep track of what’s going on with the patient on a daily basis and share the information with the doctor. Dr. Gustavo Alva, medical director of ATP Clinical Research in Costa Mesa, Calif., says that caregivers should regularly communicate which symptoms their loved one is experiencing. This will help ensure the best possible treatment.
The National Family Caregivers Association (NFCA) educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. The NFCA website is a great source of information for family caregivers of people with Alzheimer’s and other dementia. Visit the site to view a new tip sheet to help caregivers communicate with their loved one and the care team.
Read more about connecting with loved ones who have Alzheimer’s in “Communicating with Someone Who is Cognitively Impaired” in Caring Right at Home. For information on how home care supports the caregiving bond for these families, see "Caring for Alzheimer’s Caregivers."
Speak out for a strong national Alzheimer's plan! The Alzheimer's Association wants to send a message to President Obama that millions of families are counting on him to fulfill the potential of the National Alzheimer's Project Act. Sign the petition here, and let your voice be heard.
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