Caring for Someone with Dementia: Understanding What You Need

Each caregiving journey is unique, but it's important to identify what you need and find the resources that can help

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- Posted on Oct 12, 2018

Caring for Someone with Dementia: Understanding What You Need

Jennifer Cardellini is the Director for Consumer Information at Benjamin Rose Institute on Aging.

If you’re beginning to take care of a loved one with dementia, you are probably facing your own unique set of circumstances and needs. In fact, you may not know what you need. It may only become clear as you begin to understand your loved one’s situation, the dementia’s progression and the challenges you face. Perhaps you are caring for children and a parent at the same time. Or perhaps you live hundreds of miles from the person you need to care for. Just as dementia may affect people differently and progress in different ways, each caregiving journey is unique. Each person will  require different levels of assistance.

While all caregivers have different needs, it’s helpful to understand what you need, and which needs – economic, informational or emotional – are being met, and which are not. Knowing what you need helps you begin to get help to ease your caregiving journey.

“The more a need is met, the more resilient we can be,” said Lisa Weitzman, Benjamin Rose Institute on Aging Assistant Master Trainer and Care Consultant. “If we have a deficit in a need, it can add stress to our caregiving situation. What we may need today may be different than what we need tomorrow. Unmet needs exist in dynamic and changing environments, so the solutions that we seek to our needs also need to be dynamic.”

One need that many caregivers share is the need to better understand and access help, and assistance planning and preparing for change (David M. Bass, Katherine S. Judge, et al. "Negative caregiving effects among caregivers of veterans with dementia," American Journal of Geriatric Psychiatry, 20:3, 2012). That’s according to a study of 435 caregivers, conducted by the Center for Research and Education of the Benjamin Rose Institute on Aging, one of the nation’s premier centers for applied aging research located in Cleveland, Ohio. They looked at the unmet needs of caregivers of veterans with dementia. While these caregivers were predominantly female, their experiences reflect much of what Benjamin Rose has discovered in other studies of caregivers that it has conducted.

Another significant need that caregivers face is finding information about resources and assistance to help them cope with their loved ones’ memory loss. In fact, 76.8 percent of caregivers identified that they needed help knowing about available Alzheimer’s Association Services, with 66.2 percent of caregivers reporting they needed assistance understanding the types of help provided, and 66.3 percent needed help finding available services. 

There is also a tremendous need for information about alternative living arrangements. More than 70 percent of those surveyed said they needed information about assisted living facilities and nursing homes. 

While each caregiver faces their own unique challenges, seeing that so many people share certain needs can be empowering. Beginning to identify what you need and talking about it, and asking family and friends for help, is the first step to finding resources

If you’re looking for resources, check out 4 Tips for Caregivers: How to Find Resources In Your Community.

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