Professional Care
At some point, you may want to consider professional home, palliative or hospice care.

Most family caregivers reach a point when they realize they need some level of professional assistance at home. If your loved one requires constant supervision and/or assistance with everyday activities, such as bathing and dressing, it may be time. There are many types of professional care options available to you. Ask your health care team, social workers, religious organizations, charitable groups, neighbors and friends for recommendations.

Home Care

If the goal is to reduce your workload, think about hiring help for cleaning the house, running errands or preparing meals. More skilled helpers might be required to help with bathing, dressing or toileting. And finally, registered nurses are available if you need skilled medical care.

Home care and home health care include a range of medical and non-medical caregiving services provided in your home. Services can usually be arranged to meet your needs – a few hours a week up to 24 hours a day, seven days a week and could be done by a single person or a team. Medicare generally doesn’t pay for long-term care but will help pay for skilled nursing or home health care if you meet certain conditions. Use the Medicare Eligibility Tool to check your eligibility.

Typical home care services include:

  • Aides, homemakers and chore workers who help with chores around the house but usually do not provide personal or medical care for your loved one.
  • Home care aides who provide personal services such as bathing, dressing, toileting, making meals, light cleaning and transporting patients to the doctor.
  • Therapists who work with patients to restore or maintain their motor, speech and cognitive skills.
  • Registered nurses (RNs) who provide skilled medical care, including giving medications, monitoring vital signs, dressing wounds, and teaching family caregivers how to use complicated equipment at home.

Choosing a Home Care Provider

Home care services can be provided by home care agencies that coordinate home care needs, registries of independent contractors or privately employed independent providers. Several types of home care organizations may merge to provide a wide variety of services through an integrated system.

Finding the best home care provider for you will require research, but is time well spent. Important factors include the quality of care, availability of needed services, personnel training and expertise, and health insurance coverage.

Before starting a search, it is important to determine which types of services you need. You may wish to consult with your physician, nurse or social worker for assistance to help determine your needs. Once you've completed this assessment, you will be able to identify the type of home care provider who is best suited to help. Your physician or hospital discharge planner can help you locate home care providers in your area.

Home Care Resources

  • Home Modification Checklist – a checklist from the National Caregivers Library that you can print out and use to make your home safe
  • Comparison on Home Health Agencies in Your Area – An online tool provided by Medicare to give you information on how well the home health agencies in your area care for their patients
  • Next Step in Care – Information and advice to help family caregivers and health care providers plan safe and smooth transitions for patients with careful planning, clear communication and ongoing coordination.
  • CalQualityCare.org – Information on adult day care, home health, assisted living, nursing homes and other long-term care facilities, along with tips and checklists about how to choose a health care provider, questions to ask, how to pay for care and what to do if something goes wrong

Palliative Care

The goal of palliative care is to relieve the pain, symptoms and stress of serious illness. Palliative care may be provided at any time during a person's illness, even from the time of diagnosis. You can get palliative care whether you are at home or in an assisted living facility, nursing facility or hospital.

Palliative care is medical care that concentrates on reducing the severity of disease symptoms without prolonging suffering. The goal is to prevent and relieve discomfort and to improve the quality of life for people facing a fatal illness. Palliative care usually employs a team approach and may be provided at any time during a person's illness, even from the time of diagnosis. It may be given simultaneously with other treatments that attempt to treat the underlying disease.

Choosing a Palliative Care Provider

The decision about the best place for your loved one to receive palliative care depends on your individual circumstances and should involve your family. In most cases, hospital units cannot provide the appropriate environment for long term care, so look for palliative care programs that come to your home or provide a residential facility.

As people with FTD are often younger than other dementia patients, you will want to ensure that your loved one is cared for in an environment appropriate to their age. Your medical team should be able to help you identify suitable places.

Given the variable progression of FTD and the generally shorter disease course from diagnosis to death, you will want to discuss end-of-life decisions, including feeding, as early as possible after diagnosis. This allows your family member to participate in decision-making while their abilities will still allow for that. Any planning that you have done should always be shared with other care providers.

Contact us if you need advice about suitable placement for palliative care.

Palliative Care Resources

Hospice Care

Hospice care provides palliative care to relieve suffering and improve the quality of life for people who are expected to live for about six months or less. Like palliative care, hospice care can be provided whether you are at home or in an assisted living facility, nursing facility or hospital.

Hospice care provides palliative care to relieve suffering and improve the quality of life for people who are suspected to live for less than six months. Like palliative care, hospice care can be provided at home, an assisted living facility, a nursing facility or a hospital.

Choosing a Hospice Care Provider

Finding the right provider does not have to be difficult. As a first step, create a written assessment of your situation (see Planning Care) to help you determine what services you will need. Your medical team and family can help complete this assessment. Once you have an idea of what you will need, ask your medical team for specific recommendations or use the directories in the Resources section below to find providers in your area.

Next, the local hospice workers will meet with the doctor, patient and family to discuss available services and expectations and to develop a plan of care designed specifically for your loved one tailored to the family needs.

You may want to ask questions about insurance plans and payment requirements.

  • Ask what expectations the hospice will have from the patient and the patient's support system.
  • Ask what kind of support and training program the hospice has for caregivers.
  • Ask about bereavement support programs.

Hospice care is a covered benefit under Medicare for patients with a prognosis of six months or less. Medicaid covers hospice services in most states. Many private health insurance policies and HMOs offer hospice coverage and benefits. Hospice services are also covered under TRICARE, the Department of Defense's health care program for members of the uniformed services, their families and survivors. Frequently, hospice expenses are less than conventional care expenses during the last six months of life.

Hospice Care Resources

  • End of Life Issues: Hospice Care – articles from the National Caregivers Library to help you understand hospice care and find the right service for your loved one.
  • Hospice Foundation of America – an organization that explains options to people facing a life-limiting illness, hospice care, and how to cope with grief.
  • National Hospice and Palliative Care Organization – a charitable organization advocating for the needs of people facing a life-limiting illness.
  • American Academy of Hospice and Palliative Medicine – a professional organization for healthcare providers dedicated to expanding access to high-quality palliative care and advancing the discipline of Hospice and Palliative Medicine through professional education, support, research and public policy.
  • Next Step in Care – Information and advice to help family caregivers and health care providers plan safe and smooth transitions for patients with careful planning, clear communication and ongoing coordination.