Facility Care Options

Caring for a loved one with frontotemporal degeneration usually begins at home. Upon diagnosis, and often earlier, a spouse, an adult child or even an aging parent, takes on the role of caregiver, while also juggling a career, managing a household, raising a family and maintaining personal health and well-being.

Because the disease will progress, caregivers must plan ahead and periodically reassess how best to provide care for their loved one and meet their own needs over the course of the illness. The decision to move into a facility is an emotionally and logistically complex one. Here we offer some guidance and a practical approach to the process.

  • Deciding about facility care
  • Finding the right facility
  • Managing the transition from home care to facility care

Deciding about facility care

As the disease progresses, caregivers face a changing landscape. The symptoms evolve and change over time with little that is predictable in terms of any one person’s specifics issues or rate of progression. The only thing that is known for sure is that patients will need more direct assistance over time to ensure their safety and quality of life. Anyone who cares for a person with a degenerative disease like frontotemporal degeneration knows a time may come when they are unable to provide the level of care their loved one needs.

The realization that a loved one can no longer stay in the home is fraught with grief, guilt and may even feel like a failure to the caregiver. The demands of providing care at home for someone with FTD are enormous. With or without in-home health professionals, an FTD patient may come to require the 24-hour care that can be best provided in an assisted living, skilled nursing or in-patient medical facility. By moving a loved one to a facility, you are not abandoning him or her. You are providing the best care available in your situation.

Making a decision about facility care is not a moment frozen in time; it should evolve with the caregiver’s understanding of the disease and consideration of his or her own situation. By considering at what point or in what circumstances care out of the home would be indicated, the primary caregiver can plan ahead and avoid some of the stress of the process. If left until a crisis, the caregiver may be plagued with fatigue, guilt and worries that make the decision to move a loved one to a facility seem like an impossible dilemma.

Caregivers can become absorbed with daily needs and “lose the forest for the trees.” It is important to step back and take a broader look at your overall goal and how you can anticipate future needs. Thinking ahead allows you to do the homework, develop a sense of competency, and feel more prepared and in control. Ask yourself:

  • How do I make important decisions? Do I wait as long as possible, or prepare ahead and explore options?
  • What values guide my decision-making? Can I see how various options may reflect those values?
  • Who are my trusted others who know me and can be a sounding board?

It can be very helpful to talk to health professionals, people with experience as long-term caregivers, and members of FTD caregiver support groups. Don’t go it alone.

Download this checklist to guide you through some key questions to consider:  Is Facility Care Your Best Choice?

Finding facility care

The search for the right facility begins with sorting out the options. There are several types of facilities that may be appropriate for someone with FTD. There are not yet facilities designed specifically for people with FTD, so it means finding the best match among the available options. Placement will depend on finding a balance between the level of support the patient requires and the skilled care needed to ensure safety and quality of life. Factors such as location and cost often determine the specific options available. Regardless of where you start your search, it will involve doing your homework, asking questions and deciding among the best options available to you.

Read through the information and resources below to get started and when you’re ready to visit some places, take along this checklist: What to Look for When Considering Facility Care

Levels of care include:

Assisted living (also called board and care, adult living, supported care)
Bridges the gap between living independently and living in a nursing home. Assisted living typically offers a combination of housing and meals, and supportive and health care services. The federal government does not regulate assisted living and definitions of assisted living vary from state to state. It is for people who do not have severe medical problems but who need help with personal care such as bathing, dressing, grooming or meal preparation.

Alzheimer’s or dementia special care units
Designed to meet the specific needs of individuals with Alzheimer’s disease and other dementias. Special care units can take many forms and exist within various types of facility care. Such units most often are cluster settings in which persons with dementia are grouped together on a floor or a unit within a larger care facility. There are facilities, however, that are wholly dedicated to the care of people with dementia. Many families find the closest fit for care of someone with FTD is in a dedicated dementia-care unit or facility.

Nursing homes (also called skilled nursing facility, long-term care facility, custodial care)
Facilities with 24-hour medical care available, including short-term rehabilitation (physical therapy) as well as long-term care for people with chronic ailments or disabilities that require daily attention of RN’s in addition to help with personal care such as bathing or dressing or mobility. Most nursing homes have services and staff to address issues such as nutrition, skin care management, care planning, recreation, spirituality and medical care. Nursing homes are usually licensed by the state and regulated by the federal government.

Psychiatric facilities 
Serve patients with seriously agitated or aggressive behavior. Psychiatrists (physicians with special training in mental, emotional and behavioral disorders) and nurses assist in the evaluation of medication interventions, and a secure environment helps to ensure patient safety. There are different types of behavioral mental health facilities from acute care community in-patient units to long-term state institutions. The particular services and resources will vary accordingly.

Continuing-care communities
Offer several levels housing and healthcare services in the same location designed for retired people. Services ranging from independent and assisted living to full nursing and sometimes special care are available. Residents generally pay a lump sum entrance fee and monthly payments thereafter which cover both housing and healthcare. As an individual’s needs increase, they move from one level of care to another within the same community. Three-tiered communities may appeal to couples who want to live close though have different care needs.

Across all levels of care, the placement is more likely to succeed when family members develop a partnership with the facility administration and caregivers to work together in providing quality patient care. Frontotemporal degeneration is still unfamiliar to many facility providers. Be prepared to educate, advocate and show how you will be a member of the team as everyone involved shares the goal of providing the best possible care.

Starting the search

It is difficult to predict what the particular needs of your loved one will be or exactly when residential care may be appropriate. One thing is sure –the sooner you begin your research and planning, the better prepared you will be to know what options exist. There is no single right way to learn about the options available to you. A lot of information is available through the Internet, but you may prefer to start by informally asking around. Here are some resources to consider:

Read the chapters on Nursing and Assisted Living Options and Money Matters in the book What if it’s Not Alzheimer’s by Lisa Radin and Gary Radin for an overview of the issue.

Visit the following searchable websites for helpful resources:

  • CareFinder – online guide sponsored by the Alzheimer’s Association that provides information and can help in the search for the right care option.
  • Nursing Home Compare –  detailed information about every Medicare and Medicaid-certified nursing home in the US.
  • Eldercare Locator – a public service of the U.S. Administration on Aging. Includes a wide range of home and community services. Linked with Area Agencies on Aging.
  • Local Area Agency on Aging – a resource for home and community-based services for older adults and family caregivers, including respite care and housing options.
  • Long-Term Care Ombudsman – funded by US Office on Aging and operated by NCCHCR, provides consumer education and advocacy for long-term care residents.
  • Long-Term Care Community Coalition – devoted to improving care for the elderly and disabled.  Work to ensure that long-term care consumers are cared for safely and treated with dignity.

Talk to the following, you may find they can offer excellent help:

  • Caregivers and families you have encountered in support groups
  • Neighborhood senior recreational centers
  • Your physician or a social service professional in the office
  • Aging and Disability Services agencies
  • Local library reference desk
  • State or county departments of Social and Health Services

The National Association of Professional Geriatric Care Managers provides information about how acquiring a professional consultant may help in the search.

AFTD is compiling recommendations from caregivers and families who share resources that are responsive to their needs. If you find a gem, share it with AFTD through info@theaftd.org

Listen to your instincts.  You know the patient and are the expert on your own situation. What feels right matters.

Download this tool to help when you visit: What to Look for When Considering Facility Care.

The Transition from Home to Facility Care

People with frontotemporal degeneration often have difficulty adjusting to a new environment. The change means that for a time they may have difficulty finding things; feeling comfortable with new people and routines; they may feel frustrated or angry.

FTD families face an additional challenge in that most professional caregivers are not familiar with the behaviors common to frontotemporal degeneration, which are so different from those of Alzheimer’s. FTD patients are typically younger and stronger so a different approach is needed to address aggressive behaviors that may seem to present a more physical threat to facility staff and residents.

The knowledge that family caregivers have is tremendously valuable to facility staff. Nurses and professional caregivers won’t ever have as much experience as family, and are generally eager to learn what they can to provide good care. When family members appreciate the value of their own experience as well as the multiple demands on staff (from administrative changes, staff shortages or demanding residents), a fruitful partnership can develop that benefits everyone, especially the patient.

Even though the family has shifted the responsibility of day-to-day care over to the facility, it is important to remain an active partner with the staff to ensure the right approach and best care for a loved one.

Tools you can download to help with the transition:

The Daily Care Snapshot is a way to introduce your loved one to facility staff and tell them what you know about his or her likes/dislikes, interests and needs.

The document, Easing the Transition to a Facilityprovides some specific suggestions for how you can help to smooth the adjustment.