Carmen Buck
Speaker, Author - the healing power of photography and storytelling

Resources

Get the Help You Need- Dementia Caregiving

Some caregivers need help when the person is in the early stages of Dementia/Alzheimer’s Disease. Other caregivers look for help when the person is in the later stages of Dementia/Alzheimer’s Disease. You’ll want to seek help whenever you need it.

As a person moves through various stages of Alzheimer’s, their care needs will change. Dementia is a disease which typically slowly gets worse over time. The medications can help to control the symptoms but do not cure the disease. Memory loss and other symptoms get worse over time, and the needs therefore change.

Build a Support System

Your first step will be to investigate your local resources. Your support system might include a caregiver support group, the local chapter of the Alzheimer’s Association, family, friends, and faith groups. Be sure and look into your local nonprofit organizations. When I started looking into the local resources and did a simple google search for local nonprofit groups, I was stunned at the variety and depth of services. You might find a networking group where the nonprofit directors meet. The local food banks might even be a good place to ask. You can start with, “How can I learn about the local nonprofits serving the elderly here in ____?”

Resources for Alzheimer’s Care

Here are some places that can give you support and advice and were taken from the National Institute of Aging website:

NIA Alzheimer’s and related Dementias Education and Referral (ADEAR) Center
Email: adear@nia.nih.gov

Phone: 1-800-438-4380
www.nia.nih.gov/alzheimers



The ADEAR Center offers information on diagnosis, treatment, patient care, caregiver needs, long-term care, and research and clinical trials related to Alzheimer’s disease. Staff can refer you to local and national resources, or you can search for information on the website. The Center is a service of the National Institute on Aging (NIA), part of the Federal Government’s National Institutes of Health. They have information to help you understand Alzheimer’s disease. You can also get hints on other subjects, including:

  • Talking with the doctor
  • Financial and legal planning
  • Medicines
  • Comfort care at the end of life
  • Paying for care


Alzheimer’s Association


Phone: 1-800-272-3900

www.alz.org

The Alzheimer’s Association offerings differ some from area to area, however there are also national resources with the Alzheimer’s Association. You’ll find information, a help line, and support services for people with Alzheimer’s and their caregivers. Support groups can be found at the local chapter level.

Some groups, which may have separated from the national Alzheimer’s Association can be found at the local level. Alzheimer’s Texas is one such group in central Texas. You may have something similar in your area.

How do you find other organizations? Do a simple google search: Alzheimer’s resources ‘your town’ or Dementia resources. Get creative and try a variety of searches and investigate.


Alzheimer’s Foundation of America


Phone: 1-866-232-8484
www.alzfdn.org

You’ll find information about how to care for people with Alzheimer’s, and lists of services for people with the disease on the website of Alzheimer’s Foundation of America. Services include a toll-free hotline, publications, and other educational materials.


Eldercare Locator


Phone: 1-800-677-1116

www.eldercare.gov

Other important community resources can provide guidance with regards to home care, adult day care, and nursing homes. Contact the Eldercare Locator to find these resources in your area. The Eldercare Locator is a service of the Administration on Aging. The Federal Government funds this service.


National Institute on Aging Information Center

Email: niaic@nia.nih.gov

Phone: 1-800-222-2225
TTY: 1-800-222-4225
www.nia.nih.gov/health

The NIA Information Center offers free publications about aging which can be ordered online. Many of these publications are in both English and Spanish. The last time I ordered some of these, it took weeks to arrive. Some are downloadable and printable though.

Direct Services: Groups that Help with Everyday Care in the Home

Home Health Services: Medicare may pay for some home health if certain criteria is met. However, the services provided are typically short unless someone needs ‘skilled nursing.’ You might think your loved one needs skilled nursing because of their current problems, and while this might be true, the needs may not meet Medicare’s definition of ‘skilled needs.’ This type of home health care must be initiated by your physician. Families are often left to pay for services of a home health aid on their own.

Registered nurse, physical therapy, occupational therapy and other professional services are typically considered ‘skilled needs.’ The services of a home health aid for assistance with personal hygiene, simple housecleaning and so on are not skilled needs.

The home health aid might be for companionship, driving to appointments, grocery shopping, simple meal prep and so on. You can usually sign on for anywhere from 2 hours on up.

What to know about costs:

  • Home health services charge by the hour.
  • Medicare covers some but not all of home health service costs.
  • Most insurance plans do not cover these costs.
  • You must pay all costs not covered by Medicare, Medicaid, or insurance.

How to find them:

  • Ask your doctor or other healthcare professional about good home health care services in your area.
  • Search the Internet for “home health care” in your area.
  • Again, many nonprofit groups can help with transportation and some of the other needs. See the note above to find local nonprofit groups.

Here are some questions you might ask before signing a home health care agreement:

  • Is your service licensed and accredited?
  • What is the cost of your services?
  • What is included and not included in your services?
  • How many days a week and hours a day will an aide come to my home?
  • Is there a minimum number of hours required?
  • How do you check the background and experience of your home health aides?
  • How do you train your home health aides?
  • Can I get special help in an emergency?
  • What types of emergency care can you provide?
  • Whom do I contact if there is a problem?

Finding Home Health Care Services

Some home health care services are very good; others are not.

  1. Get as much information as possible before you sign an agreement.
  2. Don’t be afraid to ask home health care providers for references from people who have used their services.
  3. Check for any complaints filed against a service. At Medicare’s Home Health Compare, you can learn more about some of the home health care providers in your state. Or call Medicare at 1-800-633-4227 for the same information.
  4. You can also check with community, county, or State agencies that regulate health services or contact the Better Business Bureau in your area.
  5. Ask other families in the support groups.

Meal Services

Meal services bring hot meals to the person’s home or your home. The delivery staff do not feed the person, and they may not be able to provide special dietary needs.

What to know about costs:

  • There may be local guidelines and a qualifying process.
  • There may be no fee, although some may charge a small fee.

Begin here:

Adult Day Care Services

Adult day care services provide a safe respite care with activities and staff who are trained to care for someone with dementia/Alzheimer’s Disease. Some adult day care programs are full day and some are part days.

What to know about costs:

  • Adult day care services charge by the hour or week or month.
  • Insurance does not typically pay for this.

How to find them:

Respite Services

Respite services provide short-term care for the person with Alzheimer’s at home, in a healthcare facility, or at an adult day center. The care may last for as short as a few hours or as long as several weeks. These services allow you to get a break to rest or go on a vacation.

What to know about costs:

Respite services charge by the hour or by the number of days or weeks that services are provided. Many insurance plans do not cover these costs. These rules change often, so you’ll need to investigate what Medicare, Medicaid or your private policies cover.

Where to begin:

Geriatric Care Managers

Geriatric care managers make a home visit, suggest needed services and often coordinate these services.

What to know about costs:

  • Geriatric care managers often charge by the hour and are not usually covered by insurance.
  • You will probably have to pay for this service.

How to find them:

Counseling from a Mental Health or Social Work Professional

Caregiving is not easy. Most of us didn’t prepare to become caregivers and we often feel overwhelmed. Mental health or social work professionals help you understand your feelings, such as anger, sadness, or feeling out of control and overwhelmed, and help you cope with stress. They also help develop plans for unexpected or sudden events.

What to know about costs:

  • Professional mental health counselors charge by the hour.
  • Some insurance companies will cover some of these costs.
  • Medicare or Medicaid may cover some of these costs. Therapists who accept insurance and Medicare/Medicaid are often very booked up and sometimes for a good length of time. This means, plan ahead and don’t wait to find yourself in a place of crisis before you start looking.

How to find them:

  • It’s a good idea to ask your health insurance staff which counselors and services, if any, your insurance plan covers. Then check with your doctor, local family service agencies, and community mental health agencies for referrals to counselors.

Hospice Services

Hospice services provide care for a person who is near the end of life. They keep the person who is dying as comfortable and pain-free as possible, and provide care in the home or in a hospice facility. They also support the family in providing in-home or end-of-life care.

What to know about costs:

  • Hospice services charge by the number of days or weeks that services are provided.
  • Medicare or Medicaid may cover hospice costs.
  • Most insurance plans do not cover costs.

How to find them:

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"Just See Me-Sacred Stories from the Other Side of Dementia"

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Get your FREE chapter from Carmen's new book,"Just See Me-Sacred Stories from the Other Side of Dementia"

Thank you! Please check your email for a message from Carmen with a link to download your chapter.