What is palliative care?
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 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 longer 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
- Assisted Living: Personal Care – a checklist from the National Caregivers Library of personal and health care questions to ask when you and your loved one visit an assisted living facility
- Assisted Living: Quality Of Life – a checklist of questions from the National Caregivers Library dealing with socializing, meals, safety, and other issues to consider when you and your loved one visit an assisted living facility.
- Assisted Living: Costs and Contracts – a list of financial questions to ask when you and your loved one visit an assisted living facility.
- Find a hospital in your area that provides palliative care (USA only) – an online tool from the Center to Advance Palliative Care that located palliative care centers near you.
- National Hospice and Palliative Care Organization – a charitable organization advocating for the needs of people facing life-limiting illness.
- American Academy of Hospice and Palliative Medicine – a professional organization for healthcare providers dedicated to expanding access of patients and families to high quality palliative care and advancing the discipline of Hospice and Palliative Medicine through professional education, support, research and public policy.
- End-of-Life Care – a introduction to palliative care written by Dr. Steve Pantilat from UCSF.
- UCSF’s Palliative Care Service (PCS)