Living with Alzheimer’s: A Caregiver’s Perspective

During the month of November, which serves as National Alzheimer’s Disease Awareness Month, Beaumont will publish a three-part series on Alzheimer’s and its impact on the patient as well as caregivers and the family. Many diseases affect the patient and their family, but few take as emotional a toll as Alzheimer’s.

Read Part One and Part Two of Understanding the Impact of Alzheimer’s.

alzheimers_caregivers

The world is full of information on Alzheimer’s disease that focuses on the patient, but it’s more difficult for caregivers to find help for themselves. It’s the loved ones trying to navigate this debilitating disease and its effect on their parents, relatives or friends that have the most difficult time learning about their options and getting advice on how to deal with their situation emotionally and financially.

Initial Caregiver Information and Support

One of the first steps for caregivers dealing with Alzheimer’s is to reach out to professionals for information and support. A diagnosis of Alzheimer’s can be overwhelming and caregivers often feel alone with the burden. Research shows that caregivers suffer increased risk of depression and illness, especially if they don’t get adequate support themselves.

The Area Agency on Aging 1-B has a number of resources for caregivers, including an information and assistance line at 1-800-852-7795. They have a number of locations in Michigan, with the central office located in Southfield. The Area Agency on Aging provides a wealth of resources and information and thousands of resources for caregivers and their ailing loved ones, while also helping to advocate on issues concerning older adults, people with disabilities and family caregivers.

The Alzheimer’s Association has a website dedicated to caregivers along with a 24-hour helpline at 1-800-272-3900. Their mission is not only to eliminate Alzheimer’s through research, but to provide and enhance care and support for those affected, which includes caregivers. The Alzheimer’s Association has a number of chapters in Michigan, including one in Southfield.  They also have a brand new blog dedicated to caregivers of patients with dementia and Alzheimer’s with helpful posts like how to navigate the holidays with loved ones.

Financial and Legal Planning

One of the most stressful aspects of looking after someone with Alzheimer’s are the financial costs associated with full-time or part-time care. The Agency on Aging has trained staff that can help caregivers navigate Medicare and Medicaid assistance programs to determine what kind of financial help is available for prescription drugs or short-term and long-term assistance.

The Alzheimer’s Association also offers a number of financial and legal planning options that cover planning for care, paying for care, insurance, Medicare, Medicaid and getting the patient’s legal house in order while they can still be involved and express their wishes for future care and decisions. Putting financial and legal plans in place early will help caregivers and their loved ones understand how to pay for care and create a shared roadmap for the years ahead.

Ongoing Care Support

Alzheimer’s is a slow and steady disease and caregivers need to utilize all the support, resources and information they can to stay strong and healthy themselves. The Alzheimer’s Association, Agency of Aging and National Institute on Aging all have resources on how to handle day-to-day tasks that become more difficult with the onset of Alzheimer’s. Tips on bathing, dressing, eating, exercising, sleep problems, driving, incontinence, home safety, wandering and delusions give caregivers some of the tools to deal with the new reality of caring for someone with Alzheimer’s. Each group also helps with more complex topics such as choosing appropriate care and services like assisted living or daily chore services. Support on how to choose the level of service for your loved one and how to evaluate care facilities and nursing homes is all available.

There are a number of other national agencies that offer resources to help family caregivers through each stage of dealing with Alzheimer’s and their loved ones.

Caregiver Resources for Alzheimer’s

  • Alzheimer’s Disease Education and Referral (ADEAR) Center
    800-438-4380
    The National Institute on Aging’s ADEAR Center offers information and publications for families, caregivers, and professionals on diagnosis, treatment, patient care, caregiver needs, long-term care, education and training, and research related to Alzheimer’s disease.
  • Alzheimer’s Association
    800-272-3900
    The Alzheimer’s Association is a national, nonprofit association with a network of local chapters that provide education and support for people diagnosed with Alzheimer’s disease, their families, and caregivers. The Association also supports research on Alzheimer’s.
  • Alzheimer’s Foundation of America
    866-232-8484
    The Alzheimer’s Foundation of America provides care and services to individuals confronting dementia and to their caregivers and families through member organizations dedicated to improving quality of life. Services include a toll-free hotline, consumer publications and other educational materials, and conferences and workshops.
  • Area Agency on Aging 1-B
    800-852-7795
    Area Agencies on Aging were established under the Older Americans Act (OAA) in 1973 to respond to the needs of Americans aged 60 and over in every local community. The Area Agency on Aging 1-B is an agency for advocacy, action, and answers and drive community engagement to ensure that older adults, adults with disabilities, and caregivers reach their full potential and highest quality of life.
  • Caregiver Action Network
    800-896-3650
    The Caregiver Action Network helps educate and support people who care for loved ones with chronic illness, disability, or the frailties of old age. The organization offers an online library of information and educational materials, workshops, and other resources.
  • Children of Aging Parents
    800-227-7294
    This nonprofit group provides information and materials for adult children caring for their older parents. Caregivers of people with Alzheimer’s disease also may find this information helpful.
  • Eldercare Locator
    800-677-1116
    Eldercare Locator is a nationwide directory-assistance service helping older people and their caregivers locate local support and resources. It is funded by the U.S. Administration on Aging (AoA). AoA’s website offers information about caregiving, working with and providing services to people with Alzheimer’s, and where to look for support and assistance.
  • Family Caregiver Alliance 
    800-445-8106
    Family Caregiver Alliance is a nonprofit organization that offers support services and information for people caring for adults with Alzheimer’s, stroke, traumatic brain injuries, and other cognitive disorders. Programs and services include an information clearinghouse for FCA’s publications.
  • National Institute on Aging Information Center 
    800-222-2225 (toll-free)
    The NIA Information Center offers a variety of information about health and aging.
  • Well Spouse Association
    800-838-0879
    This nonprofit membership organization gives support to spouses and partners of the chronically ill and/or disabled. It offers support groups and a newsletter.
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