During National Family Caregivers and National Alzheimer’s Awareness Month in November, the Alzheimer’s Association is highlighting six essential terms for Alzheimer’s and dementia caregivers to know.

Currently, there are more than 47,000 caregivers in Delaware helping over 19,000 individuals living with Alzheimer’s.

“November is the month in which we honor Alzheimer’s and dementia caregivers. We also strive to highlight important elements of the caregiver experience,” said Katie Macklin, senior director of advocacy for the Alzheimer’s Association’s Delaware Valley chapter. “This month, we’re sharing six essential terms with insights and resources designed to support our local caregivers. These terms highlighted are commonly used in Alzheimer’s and dementia care but not always familiar to family caregivers. It’s important that we not only increase awareness of these terms but also the important information and resources they represent.”

• Person-centered care — Most often associated with professional caregivers in long-term care settings, person-centered care offers important guidance for family caregivers, as well. It requires understanding the world from the perspective of the individual living with dementia. It encourages caregivers to take into account a person’s interests, abilities, history and personality to inform interactions and care decisions.
• Dementia-related behaviors — This term is used to describe wide-ranging behavioral symptoms associated with Alzheimer’s and other dementia. While most people associate Alzheimer’s and dementia with memory loss due to changes in the brain, there are several other challenging behaviors that can accompany an Alzheimer’s or dementia diagnosis, including aggression and anger, anxiety and agitation, depression, sleep disturbances and sundowning, wandering, suspicions and delusions. Underlying medical conditions, environmental influences and some medications can impact these behaviors or make them worse.
• Caregiver burnout — Caring for someone living with Alzheimer’s or another dementia can be exhausting — mentally, physically and emotionally. In fact, according to the 2022 Alzheimer’s Disease Facts and Figures report, these caregivers report experiencing higher levels of stress than non-dementia caregivers, including 59% of them reporting their emotional stress as high or very high (non-Alzheimer’s caregivers-41%); 35% reporting declining health because of caregiving (non-Alzheimer’s caregivers-19%); and 27% delaying or declining things they should do for their own health.
• Respite care — Respite care provides caregivers a temporary rest from their duties, while the person living with Alzheimer’s continues to receive help in a safe environment. It can be provided at home — by a friend, other family member, volunteer or paid service — or in an adult day care or long-term care community.
• Care consultations — A care consultation can help family members work through tough decisions, anticipate challenges and develop an effective care plan. The Alzheimer’s Association offers these consultations through its 24/7 Helpline (800-272-3900). During these discussions, master-level clinicians address wide-ranging issues, including disease progression, care and living options, and referrals to local support services. In addition, Medicare covers care planning for individuals with cognitive impairment. Many family caregivers overlook or are not aware of this valuable benefit, which reimburses health professionals to provide information about medical and nonmedical treatments, clinical trials and support services.
• Treatment pipeline — There are more than 100 disease-modifying Alzheimer’s treatments in clinical trials, and researchers often refer to this as the treatment pipeline. Earlier this fall, positive results from phase 3 clinical trials for the treatment of early-stage Alzheimer’s disease were announced. These are the most encouraging results in clinical trials treating the underlying cause of Alzheimer’s to date. While they will not provide a cure to Alzheimer’s and other dementia, the Alzheimer’s Association is hopeful they will address the underlying biology of the disease to help slow its progression. Caregivers are encouraged to stay abreast of these and other potential treatments. In addition, they can play a role in advancing treatments by enrolling in such trials.

“Education is key when it comes to understanding Alzheimer’s and dementia,” Ms. Macklin said. “These six essential terms can empower our 47,000 family caregivers with the knowledge and resources to support them through their journey caring for a loved one living with the disease.”

The Alzheimer’s Association offers virtual and in-person support groups and education programs. To find out more, visit here or call 800-272-3900.