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Six Essential Terms Every Alzheimer’s and Dementia Caregiver Needs to Know

Six Essential Terms Every Alzheimer’s and Dementia Caregiver Needs to Know
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November 1, 2022
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  • November is National Family Caregivers and National Alzheimer’s Disease Awareness Month
  • Alzheimer’s Association offers guidance to America’s 11 million Alzheimer’s caregivers
CHICAGO, November 1, 2022 — 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.”

Alzheimer’s Caregiving: By the Numbers

  • More than 11 million people in the U.S. are providing unpaid care to a person living with Alzheimer’s or dementia.
  • In 2021, these caregivers provided an estimated 16 billion hours of unpaid care valued at more than $271 billion.
    • 83% of the help provided to older adults in the U.S. comes from family members, friends or other unpaid caregivers.
    • Nearly half of all caregivers (48%) who provide help to older adults do so for someone with Alzheimer’s or another dementia.
    • Among primary caregivers of people with dementia, over half take care of their parents.
    • Approximately two-thirds of caregivers are women, and one-third of dementia caregivers are daughters.
    • Approximately one-quarter of dementia caregivers are “sandwich generation” caregivers, meaning they care not only for an aging parent, but also for children under age 18.
  • In 2021, the lifetime cost of care for a person living with dementia was $377,621. 
    • 41% percent of caregivers have a household income of $50,000 or less.
  • The care provided to people with Alzheimer’s disease and other dementias is wide-ranging and, in some instances, all-encompassing. Caregivers for people with dementia tend to provide more time-intensive and extensive assistance and experience more difficulty than caregivers of individuals without dementia.
    • Caregivers of people with dementia report providing 27 hours more care per month on average (92 hours versus 65 hours) than caregivers of people without dementia.
    • Among all older adults with dementia, 77% receive assistance with at least one activity of daily living (ADL), such as bathing and dressing, in contrast to only 20% of older adults without dementia.
    • One study found people with dementia required 151 hours of caregiving per month at the outset of dementia, increasing to 283 hours per month eight years later.


About the Alzheimer's Association

The Alzheimer’s Association is a worldwide voluntary health organization dedicated to Alzheimer’s care, support and research. Our mission is to lead the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia®. Visit or call 800.272.3900.

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