Resource Guide: 9 Care Options for People Living with Dementia

A Comprehensive Guide on Alzheimer's Support Services

Often, individuals with Alzheimer's or another kind of dementia hope to stay in their home as long as possible. If you are a caregiver for someone with Alzheimer's, you may have the unique challenge of balancing several different roles such as partner, adult child, parent, and employee. If the time comes when you need more support, there are several options for help in caring for someone with dementia.

1. Home Health Care

Home health care is medical care and assistance provided within one’s own home. This can include professional nurses, nurses’ aides, physical, occupational or speech therapists, dietitians, and medical social workers. The term home health care generally refers to services that provide medical or caregiving services.

What Kinds of Services Might Home Health Provide?

Home health care staff can come for only a couple of hours or several hours at a time to help with care needs if you're gone at work, for example. This can help provide peace of mind, knowing that the staff members are trained to help with incontinencedifficult behaviors or other challenges.

2. Home Helpers and Companions

There are several other in-home services you can hire for assistance, such as housekeeping, grocery shopping, and companions who visit, prevent boredom and reduce the potential for wandering, These services are sometimes referred to as home care services, in contrast to the home health services described above, since medical care is not being provided.

 

3. Meal Delivery Services

If preparing food or remembering to eat regularly becomes too difficult, many communities have meal services available. These agencies will deliver a ready-made healthy meal right to your home. Meals on Wheels is one of these types of programs. These meal services can help maintain the health and strength of the person by providing adequate nutrition and hydration.

4. Rotating Family Schedule

If you're fortunate enough to have other family members in the area, consider setting up a schedule and dividing up the responsibilities of caregiving so that not all of the duties and time requirements are being met by the primary caregiver. Sometimes, family members are glad to help and simply need to be directed as to the logistics of how, what and why. Other times, family members may be less willing to help. However, if you're able to explore this option by setting up a family meeting, you may be able to work together to support each other towards the goal of caring well for an aging parent.

You can brainstorm together with different family members about what they can contribute, such as a whole day every week, two hours over lunchtime or an evening every week. You can also divide up responsibilities by designating someone specific to take care of clothing, food, bill paying, physician appointments, medications, bathing, etc. When you agree on something, be sure to write it down and post it in an agreed-upon location to avoid any confusion or miscommunication. This way, everyone involved can be reminded of their shift and can also work out trades with other family members when events come up.

5. Adult Day Care Programs

Many local communities have adult day care programs. These are similar to child care programs in that you bring your loved one to a place where they are cared for, fed, and provided with activities. The difference is that the care is geared toward adults with dementia and the caregivers are trained in handling the different aspects of the disease.

Although many programs require private funds, some agencies may have grants or assistance funds available to help. Adult day care programs can be one way to keep your loved one residing at home while still receiving stimulation and care during the day when you're not home. Many individuals become very comfortable with the staff and really enjoy their time at these centers.

6. Visiting Nurses & Physicians

Do you have a difficult time getting your loved one to the physician's office? Many communities or their surrounding area have visiting nurses and visiting physicians. They will come to your home to provide assessment and care. Some of these medical services provided may be covered by Medicare, Medicaid or your insurance, while others may be available only by paying a fee. Check online or in your phone book to see if visiting nurses and physicians are available in your area.

7. Respite Care

If you're the primary caregiver for someone with dementia, you may need more help at times. Respite care is designed to give caregivers a break from the regular routine of being a caregiver- in essence, to fill in the gaps when you need help. It's sometimes also called replacement care.

Respite care may be available in residential facilities or through increasing or putting into place additional in-home services. Respite care can help if you're going to be out of town or simply need a break to prevent caregiver burnout

8. Facility Options

Although many people hope to be able to keep their loved one at home, for some people, facilities that provide residential care are the best option. This may be because their loved one requires a significant amount of care around the clock, the care is too physically or emotionally difficult, challenging behaviors make it too dangerous to be cared for by one person or there's only financial coverage available from Medicaid in a nursing home. 

Residential facilities for people living with dementia can include nursing homes, assisted livings and special dementia care units. Which is chosen depends on how much care is needed, what facilities are present in your community and which financial resources are available, 

9. Palliative or Hospice Care

In the late stages of Alzheimer's, your loved one might benefit from palliative or hospice care. Palliative care is supportive care focused on comfort, while hospice care is also focused on comfort but includes a decision not to pursue aggressive care or treatment. Often, Medicare programs provide some coverage for both palliative and hospice care.

Where to Find Care Options in Your Community

  • Word of Mouth

A referral from a friend or neighbor is often one of the best ways to find community services.

  • Ask the doctor

Your doctor can be a resource for community agencies that provide helpful services for your loved one. 

  • Online

Search online for care resources in your local community.

  • Colleges

Community colleges and universities often have online job boards where you can post open positions.

  • Alzheimer's Association and the Area Agency on Aging

The Alzheimer's Association can provide you with a list of local options for care in your community, and also guide you to those that specifically are designed to assist people living with dementia. The Area Agency on Aging may be able to refer you to specific community agencies that you were unaware of, or help by locating or coordinating financial coverage for dementia care.

Keep in mind that if you don't use an agency, you should consider conducting a background check and contact references to reduce the risk of identity theft or elder abuse.

How Can These Care Options Help?

Sometimes, individuals with dementia become restless, agitated or confused. If they live with family members in their own home, their caregivers may become frustrated or tired from providing 24-hour care. Supplementing care either at home or through other care resources can allow the caregiver to attend a work meeting, run errands, spend time with their family, go read a book somewhere quiet or enjoy a cup of coffee with a friend.

Additionally, if a particular task such as bathing or showering is especially difficult, you can troubleshoot that challenge by arranging a twice-weekly bath, for example. Being proactive about using care resources reduces your chance of burnout and ensures that you are able to meet your loved one's needs. 

How to Pay for Care Options

Some Medicare plans will help pay for inpatient rehabilitation stays for a limited time. Typically, this coverage is available in there's a specific decline or acute condition where the person may benefit from inpatient therapy. Traditional Medicare usually requires a three-day hospital stay in the last 30 days to provide this benefit, while several Medicare Advantage plans do not require the hospital stay.

Medicare plans may also cover some home health care for a limited time with a physician's order.

  • Medicaid

Medicaid is continuing to expand its coverage for services that prevent or reduce nursing home stays. This is because most people desire to live at home and often, supplemental services such as home care or adult day care are less costly for Medicaid than nursing home coverage. 

States have different ways of administering Medicaid programs, but there often is a limited number of slots open through the Medicaid waiver program for individuals to receive care at home from a home health agency and have it paid for by Medicaid. The goal of these programs is to provide some in-home help to keep people at home if possible.

Medicaid also provides coverage for nursing home care if the person qualifies financially and requires a high enough level of medical care. 

Sometimes, financial benefits that could be used for respite care are available through the Veteran's Administration (VA).

  • Private Pay

If the individual with dementia has financial resources, using them for care assistance may be a wise investment in the life of both the caregiver and the care recipient. 

  • Volunteer Services

Community organizations such as churches or other social groups may have someone available to come visit with your loved one once a week.This option could provide some support without draining financial resources.

Sources:

Alzheimer's Association. Alzheimer's and Dementia Caregiver Center. Care Options. http://www.alz.org/care/alzheimers-dementia-care-housing.asp

University of California, San Francisco. Frontotemporal Demetia.  http://memory.ucsf.edu/ftd/livingwithftd/professionalcare

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