During National Family Caregivers and National Alzheimer’s Disease Awareness Month in November, the Alzheimer’s Association is highlighting six essential terms that are important for Alzheimer’s and dementia caregivers to know. Currently, there are more than 11 million caregivers across the country providing care to more than 6 million Americans living with Alzheimer’s.
“November is a month in which we not only honor Alzheimer’s and dementia caregivers, but highlight important elements of the caregiver experience,” said Beth Kallmyer, vice president, care and support, Alzheimer’s Association. “We’re sharing six essential terms with insights and resources that we think can help caregivers tremendously. These terms 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.”
Six Essential Terms Alzheimer’s and Dementia Caregivers Need to Know
1. 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.
“Person-centered care is understanding and embracing all the things past and present that make your family member unique,” Kallmyer said. “Every experience and interaction is an opportunity for engagement and knowing what is meaningful to the person can make a big difference in how they respond.”
2. 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.
- Sleep disturbances and sundowning.
- Wandering.
- 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.
3. 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, 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.
Sustained caregiver stress can lead to caregiver burnout – a state of physical, emotional and mental exhaustion. “Caregivers who experience burnout put their own health at risk and compromise their ability to care for someone else,” said Kallmyer. “As hard as it may be, caregivers need to make their health and well-being an equal priority. Enlisting the help of family and friends to help with caregiving responsibilities or joining a caregiver support group can make a big difference and help prevent caregiver burnout.”
The Alzheimer’s Association offers Caregiver Stress Check to help caregivers identify and avoid caregiver burnout.
4. 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 provider — or in a care setting, such as adult day care or long-term care community. Kallmyer said using respite services can support and strengthen family members’ abilities to be a caregiver.
5. Care Consultations – A care consultation can help family members work through tough decisions, anticipate future challenges and 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.
6. 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. The Alzheimer’s Association recent statement on treatment pipeline offers more details.
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.
“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,” Kallmyer said. “We hope shining a light on these six terms can provide helpful guidance to Alzheimer’s and dementia caregivers, so they are better prepared to navigate disease-related challenges.”
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