Caregiving for someone with dementia can be overwhelming, especially for first-time caregivers. These caregivers not only experience the emotional impact that occurs when a close family member is diagnosed with Alzheimer’s or another dementia, but also face a steep learning curve in their new role as caregiver. One of the most important things a dementia caregiver can do is to educate themselves about the disease and the care and support resources available to help.
This November, during National Family Caregivers and National Alzheimer’s Disease Awareness Month, the Alzheimer’s Association – Eastern North Carolina Chapter is highlighting six essential terms that are important for the 356,000 in North Carolina Alzheimer’s and dementia caregivers to know.
- 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 – The 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 along with many others. The Alzheimer’s Association offers tips and strategies to help caregivers address these and other disease-related behaviors.
- Caregiver Burnout – Caring for someone living with Alzheimer’s or another dementia can be exhausting – mentally, physically and emotionally. In fact, according to the Alzheimer’s Association 2022 Alzheimer’s Disease Facts and Figures report, Alzheimer’s caregivers report experiencing higher levels of stress than non-dementia caregivers. The Alzheimer’s Association offers Caregiver Stress Check to help caregivers identify and avoid caregiver burnout.
- Respite Care – Respite care provides caregivers a temporary rest from caregiving, while the person living with Alzheimer’s continues to receive care in a safe environment. These respite services can be provided at home — by a friend, other family member, volunteer or paid service — or in a care setting, such as adult day care or long-term care community.
- Care Consultations – A care consultation can help family members work through tough decisions, anticipate future challenges, develop an effective care plan. The Alzheimer’s Association offers free care consultations through its 24/7 Helpline (800.272.3900). During these consultations, master-level clinicians work with families to discuss wide-ranging, disease-related issues, including disease progression, care and living options and referrals to local support services.
- Treatment Pipeline – Currently, there are more than 100 disease-modifying Alzheimer’s treatments in clinical trials – researchers often refer to this as the treatment pipeline. Earlier this fall, positive topline 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. Caregivers and individuals living with Alzheimer’s, or another dementia can play an active role in helping advance potential new treatments by enrolling in a clinical trial.
“Education is key when it comes to understanding Alzheimer’s and dementia,” said Lisa Roberts, executive director of the Alzheimer’s Association – Eastern North Carolina Chapter. “These six essential terms can empower our North Carolina family caregivers with the knowledge and resources to support them through their journey caring for a loved one living with the disease.”
As part of National Alzheimer’s Disease Awareness Month and National Family Caregivers Month, the Alzheimer’s Association’s Chapters in North Carolina are offering free education programs and support groups to help all North Carolina caregivers and their families. For a complete list or to register for upcoming programs, visit this website.
To learn more about Alzheimer’s disease, support families and people living with the disease and information on the Alzheimer’s Association – Eastern North Carolina Chapter, visit their website or call 800.272.3900.
By Christine John-Fuller