Coordinating Care

Quality health care in FTD depends on finding the right health professionals, advocating for services, arranging payment and following up. However, coordinating care at this level can be a dauntingly complex task. If you are managing the health care needs of a loved one with FTD, the following information can help guide you.

Where do I start?

If you are the primary caregiver, it is likely your responsibility to schedule appointments, provide insurance and medical information and handle numerous care-related tasks. Here are some tips to help you manage these tasks:

  • Address symptoms while confirming diagnosis. FTD can be a very difficult disease to clearly diagnose. The diagnostic process can be extremely long and confusing, and involve visits to multiple specialists for evaluation. Moreover, FTD is a progressive disease and will change over time, so diagnostic details may also change. Be prepared to address care for troubling symptoms even while you are coordinating appointments to establish or clarify the diagnosis.
  • Maintain a consistent schedule of routine healthcare. Having FTD does not mean someone is immune to other ailments and illnesses. It may, however, make it difficult for the person to understand or communicate changes in their physical well-being. Routine problems like the common cold or a toothache can cause changes in behavior or functioning that appear to be the result of FTD, but are actually unrelated — and easily treatable. Additionally, planning, scheduling, and participating in office visits may trigger resistance, confusion, and anxiety from someone with FTD. By establishing as much routine and consistency as possible, you can reduce stress for everyone involved, and help ensure higher quality care.
  • Ask about obtaining medical records when you schedule appointments. Everyone has access to their own medical records, but sometimes you have to request them. There is necessary paperwork; there are consent requirements for the release of records to a caregiver, and there are processing and copying fees. The rules governing each of these may vary by provider or even state. Request records routinely.
  • Keep paperwork organized and accessible. Create a permanent and accessible healthcare file. It should include lists of current and past healthcare providers, current and discontinued medications and dosages, copies of medical records and relevant legal documents, and insurance information and payment receipts. By organizing these healthcare records, you can make it easier on you and everyone else involved in the care of your loved one. And remember: It’s much easier to store medical records that you don’t need than to obtain old records you end up needing.
  • Use a single point of contact for healthcare providers. People can live for many years with FTD. While there are no treatments that can modify the course of FTD today, individuals can still benefit from a broad range of treatments and therapies to address symptoms. You will likely have to engage many different providers over time. It is easiest when one person in a family is the point of contact for all providers.

What health professionals can help?

People can live for many years with FTD. Maintaining the highest possible quality of life will likely require engagement with a broadly comprehensive medical team: a primary care physician, neurologist, psychiatrist or geriatrician, and other specialists, in addition to a case manager, community services, family and friends. No one can manage FTD without help.

How do I find doctors who know about FTD?

Because FTD is still today far too little known and relatively uncommon, it can be difficult to find professional help from people who have experience working with it.

Your primary care physician should be able to refer you to a neurologist. Neurologists who specialize in the clinical care of FTD, however, are rare. Many of the centers listed on AFTD’s regional resource pages are directed by a neurologist and will have medical staff, including neurologists, with a special interest in FTD. These centers primarily see patients for an initial diagnostic evaluation, or second opinion, with subsequent follow up appointments often related to participation in a research project. They may not offer routine office visits or provide clinical care as-needed. If that is your primary medical need, be sure to ask the center nearest you whether they provide access to neurologists or physicians for ongoing or as-needed clinical care.

The same is true of all federally funded Alzheimer’s Disease Research Centers (ADRCs) in the U.S. These centers are more likely to have medical staff that specializes in Alzheimer’s disease rather than FTD. Regardless, the overlap between the two makes the ADRCs an important resource for people coping with either disease.

The best way to find a local neurologist, psychiatrist, geriatrician, or other healthcare professional in your area who has experience in FTD is by word of mouth. If you attend a local FTD support group, ask for suggestions from the group’s facilitator or members. You can also ask other FTD caregivers. Insurance companies will provide you with a list of providers in your area, although there is no guarantee that they will be familiar with FTD.

If these avenues don’t help, contact AFTD’s HelpLine; we may be able to offer suggestions or network for you by reaching out to other caregivers in your area. You can help your current PCP and health providers to learn about FTD by sharing AFTD information and resources – consider doing facility outreach by becoming an AFTD volunteer. Again, word of mouth can educate others and improve the care available in your community.

What community services can help?

There is a wide array of community services that can assist you with managing daily care. You may not need them at the moment, or at all, but becoming familiar with these resources now will make transitions in care easier. (A social worker or geriatric case manager can be a valuable ally to help identify suitable services.)

  • In-home care services. Home healthcare can provide services on an hourly basis for assistance with personal care, physical or occupational therapy. Companion services may offer short-term respite for the main care provider.
  • Assistive equipment. If physical symptoms impair mobility, assistive equipment such as walkers, wheelchairs, Hoyer lifts or hospital beds may be necessary. A physical or occupational therapist can evaluate mobility and strength and recommend adjustments to minimize the risk of falls. Look for state or federal health programs to help assess your home environment and pay for necessary modifications or durable medical equipment.
  • Adult day services. Day programs offer daily structure, activities and supervision. They are an important service for people who are active, for when the main care partner is working, or to provide regular respite from round-the-clock care. Some programs are designed for people with dementia.
  • Counselor or therapist. Professional assistance can be valuable to cope with the losses, changing relationships and increased stress that come with FTD. Consider individual, couples’ or family therapy depending on your situation and need.

Should I consider residential care?

For many families, there comes a time when it becomes necessary to move a loved one with FTD into a facility. This can be a difficult transition to consider, but in many situations the facility may offer both the person with FTD and their care partners the best possible quality of life.

Making the Decision

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.

Finding the Right Facility

There are several types of facilities that may be appropriate for someone with FTD. Choosing the right one depends on balancing the level of support the patient requires and the skilled care needed to ensure safety and quality of life.

  • Assisted living facilities (also known as board and care, adult living or supported care facilities) bridge 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.
  • Alzheimer’s or dementia special care units are designed to meet the specific needs of individuals with Alzheimer’s disease and other dementias. Many families find that the closest fit for care of someone with FTD is in a dedicated dementia-care unit or facility.
  • Nursing homes (also known as skilled nursing, long-term care or custodial care facilities) have 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 the daily attention of RN’s.
  • Psychiatric facilities serve patients with seriously agitated or aggressive behavior. Psychiatrists and nurses assist in the evaluation of medication interventions, and a secure environment helps to ensure patient safety.
  • Continuing-care communities are housing communities designed for retired people and offer several levels of healthcare services in the same location. As an individual’s care needs increase, they move from one level of care to another within the same community. This tiered structure may appeal to couples who have different care needs but want to remain together.

Across all levels of care, the placement is more likely to succeed when family members develop a partnership with the facility staff and administration 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 Your Search

The sooner you begin to research long-term care options for your loved one, the better prepared you will be. Here are some resources to consider:

  • What If It’s Not Alzheimer’s?, edited by Lisa Radin and Gary Radin, includes an entire chapter on finding long-term care facilities for people with FTD. overview chapter on facilities
  • Nursing Home Compare: Provides detailed information about every Medicare and Medicaid-certified nursing home in the U.S.
  • Eldercare Locator: A public service of the U.S. Administration on Aging that includes a wide range of home and community services. Linked with Area Agencies on Aging.
  • Your 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.
  • National Long-Term Care Ombudsman Resource Center: Funded by the U.S. Office on Aging and operated by the Consumer Voice, this resource center provides consumer education and advocacy for long-term care residents.
  • Aging Life Care Association: Provides information about how acquiring a professional consultant may help in the search.

When you are ready to begin visiting facilities, print out our checklist What to Look for When Considering Facility Care.

Transitioning from Home to Facility Care

Making the transition to a residential care facility is difficult under normal circumstances, but the challenges are compounded when FTD is involved. The change in environment can make people with FTD feel frustrated, angry and uncomfortable. Meanwhile, facility staff will likely be unfamiliar with FTD and its symptoms; they may misapply care strategies that worked with people diagnosed with Alzheimer’s, a move that is likely to be counterproductive.

AFTD has some resources that can help make this difficult transition:

  • Easing the Transition: Residential Long-Term Care and FTD: This issue of AFTD’s Partners in FTD Care newsletter takes an in-depth look at the specific challenges associated with moving into a care facility and offers practical advice on how to deal with them.
  • Daily Care Snapshot: Filling out this form is an easy way to introduce your loved one to facility staff and tell them what you know about his or her likes/dislikes, interests and needs.
  • Easing the Transition to a Facility: A short checklist of tips and strategies that can help your loved one with FTD adjust to life in a residential care facility.

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. Remember that the knowledge that family caregivers have is tremendously valuable to facility staff.

What is hospice care?

Chilren’s Response to Anticipated Death and How to Help — Click to enlarge chart

Hospice is a philosophy of care that provides comfort as life nears its end (usually within six months or less), rather than using aggressive lifesaving measures that are unlikely to offer any promising outcomes. Hospice does not provide 24-hour, direct caregiving services. Rather, it augments the care currently being provided in a person’s home or residential facility (including long-term care facilities, a common site of death for someone with dementia). Medicare, Medicaid and most private health insurances pay for hospice. Some hospice agencies provide needed care regardless of one’s ability to pay.

If a family member has a terminal illness, it is never too early to learn about hospice and investigate hospice agencies as part of planning for health care. However, since FTD is a terminal illness that often strikes people aged 60 and younger, many people are diagnosed before they have adequately planned their end-of-life care needs.

To help families prepare for hospice, AFTD has published an issue of Partners in FTD Care that deals exclusively with comfort care and hospice in advanced FTD. The case study tells the story of Mark H., diagnosed with bvFTD at 60, and his wife, Terry, who collaborates with health care professionals to define Mark’s care goals as he nears the end of his life. It explains how health care professionals can work with family members to ensure that persons diagnosed with FTD receive end-of-life care that matches their wishes.

For children and teenagers whose lives are directly affected by FTD, grief can be a complicated and ongoing process. This chart outlines common responses of children at different developmental stages and ways that family and friends can help.