Alzheimer’s Association offers guidance to the 356,000 Alzheimer’s caregivers in North Carolina
During National Family Caregivers and National Alzheimer’s Disease Awareness Month in November, the Alzheimer’s Association’s Western Carolina Chapter and Eastern North Carolina Chapter are highlighting six essential terms that are important for Alzheimer’s and dementia caregivers to know. Currently, there are more than 356,000 caregivers in North Carolina providing care to more than 180,000 living with Alzheimer’s.
“While we do so throughout the year, during this month especially, we celebrate the heroic contributions of Alzheimer’s and dementia caregivers, while also highlighting key aspects of the caregiver experience,” said Katherine L. Lambert, Regional Leader for GA, NC & SC and CEO of the Alzheimer’s Association – Western Carolina Chapter. “While each dementia journey is different, there are insights and resources we want to put in the hands of our state’s caregivers to help them navigate the path.”
There are terms are commonly used in Alzheimer’s and dementia care, but not always familiar to family caregivers. The Alzheimer’s Association offers guidance below to caregivers of Alzheimer’s and all forms of dementia.
Six Essential Terms Alzheimer’s and Dementia Caregivers Need 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
- Sleep disturbances and sundowning
- Suspicions and delusions
Underlying medical conditions, environmental influences and some medications can impact these behaviors or make them worse. 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 the Alzheimer’s Association2022 Alzheimer’s Disease Facts and Figures report, Alzheimer’s caregivers report experiencing higher levels of stress than non-dementia caregivers, including:
- 59% of Alzheimer’s caregivers report their emotional stress as high or very high (non-Alzheimer’s caregivers – 41%)
- 35% report declining health because of caregiving (non-Alzheimer’s caregivers – 19%)
- A recent national poll found 27% of caregivers for people with dementia delayed or did not do things they should for their own health.
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. It 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. Using respite services can support and strengthen family members’ abilities to be a caregiver.
- 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.
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 affected individuals and their caregivers with information about medical and non-medical treatments, clinical trials and support services available in the community — all of which can contribute to a higher quality of life. The Alzheimer’s Association encourages caregivers caring for someone covered by Medicare to ask their health provider about this important benefit.
- 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.
While these new treatments will not provide a cure to Alzheimer’s and other dementia, the Alzheimer’s Association is hopeful these new treatments will address the underlying biology of the disease in new ways to help slow the progression of Alzheimer’s disease. This could mean more time for individuals to actively participate in daily life, have sustained independence and hold on to memories longer. Alzheimer’s Association recent statement on latest treatment.
Caregivers are encouraged to stay abreast of these and other potential treatments as they move forward. In addition, 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.”
To learn more about Alzheimer’s disease and for support families and people living with the disease, visit alz.org/honor.
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. Featured programs include:
- Managing Money: A Caregiver’s Guide to Finances (November 10 | Huntersville, NC) – If you or someone you know is facing Alzheimer’s disease, dementia or another chronic illness, it’s never too early to put financial plans in place. Join us to learn tips for managing someone else’s finances, how to prepare for future care costs and the benefits of early planning.
- Caregiving During the Holidays – For many caregivers the holiday season gives rise to stress, frustration and anger, instead of peace and goodwill. This program is designed to teach caregivers to care for themselves, their loved ones, and about holiday safety all while giving suggestions that may make the holidays more enjoyable for you and your loved ones.
For a complete list or to register for upcoming programs, visit act.alz.org/ncmonthlyprograms or call 800-272-3900.