Paliative Dementia

Frequently Asked Questions

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What is palliative care?

Palliative care refers to the comprehensive management of the physical, psychological, social, spiritual and existential needs of individuals with incurable, progressive illnesses. The goal of palliative care is to achieve the best possible quality of life through relief of suffering, control of symptoms, and restoration of functional capacity, while remaining sensitive to personal, cultural and religious values, beliefs and practices. Palliative care is the most appropriate approach to individuals who are dying, but is also appropriate for individuals with serious disease who are still pursuing aggressive life-sustaining treatment. The goal of palliative care is comfort and dignity for the person living with the illness as well as the best quality of life for both this person and his or her family. A "family" is whoever the person says his or her family is. It may include relatives, partners and friends.

How is palliative care different than hospice?

The goals of hospice and palliative care are similar and the terms are sometimes used interchangeably. Palliative care services are viewed as encompassing a wide variety of potential activities beyond the provision of hospice care. Hospice care is an organized program for delivering palliative care. The United States Medicare Hospice Benefit limits care to individuals who: 1). agree to therapy with a palliative intent; 2). have a life expectancy of less than 6 months if the disease runs its usual course in the judgment of two of the resident's attending physicians and; 3). elect the Medicare Hospice Benefit for coverage of all services related to their terminal illness. Therefore, referral to hospice requires that all attempts at life prolongation or curative therapy are forgone. As such, the individual's attitude must be one of acceptance of death. By contrast, palliative care is more inclusive, involving individuals who are severely ill and needing attention to suffering but are not terminally ill, individuals who are terminally ill but not ready to accept hospice, dying individuals who are still pursuing life-sustaining therapies, individuals transitioning to hospice, individuals who are refusing hospice for other reasons, and individuals who are unable to afford hospice. Palliative care programs generally address the physical, psychosocial, and spiritual needs and expectations of individuals with life-threatening illnesses at any time during that life-threatening illness' even if life expectancies extend to years. Although the focus intensifies at the end of life, the core issues of relief of suffering and improvement of quality of life are salient throughout the course of the illness. No fees are charged to individuals and families for palliative care services. Participants will receive the special services of the palliative care team in the comfort and privacy of their living quarters.

Who benefits from palliative care?

Individuals and families living with chronic or life-threatening illnesses benefit from palliative care. For example, many people who receive palliative dementia care have Alzheimer's disease in addition other diseases such as advanced heart, respiratory and kidney disease, arthritis, and sensory deficits.

What is involved in palliative dementia care care?

1. Pain management - People living with chronic or life-threatening illness often experience pain. As part of the palliative care program the palliative care staff work with individuals with dementia and their families to find out what is causing the pain and the best ways to relieve it. Pain may be managed with narcotics and other drugs and by other complementary therapies such as massage therapy and relaxation exercises.
2. Symptom management - Often people have to deal with a variety of other symptoms. These can include loss of appetite, nausea, weakness, difficulty breathing, bowel and bladder problems and confusion including, fatigue, dyspnea, dry mouth, edema and pruritus. Common psychiatric symptoms may include anxiety, depression, delirium and sleep disorders. Palliative care can help relieve these symptoms that may be very distressing.
3. Social, psychological, emotional and spiritual support - The health of the whole person is important in palliative care. Because of this, palliative care services provide many different kinds of support to both the individual and family. Palliative care services provide support to work through the emotions and grief regarding the dying process. Bereavement support may begin when the grieving process starts. This may be before the actual death of a person with dementia. This type of support is an important part of palliative care for people who may have faced many losses over a short period of time.

What Is An Advance Directive?

Generally, an advance directive is a written statement you complete in advance of serious illness about how you want medical decisions made. The two most common forms of advance directives are living wills and durable powers of attorney for health care. An advance directive allows you to state your choices for health care or to name someone to make those choices for you if you become unable to make decisions about your medical treatment. In short, an advance directive can enable you to make decisions about your future medical treatment. You can say "yes" to treatment you want or say "no" to treatment you don't want.

What Is A Living Will?

A living will generally states the kind of medical care you want (or do not want) if you become unable to make your own decision. It is called a "living will" because it takes effect while you are still living. Most states have their own living will forms, each somewhat different. It may also be possible to complete and sign a preprinted living will form available in your own community, draw up your own form, or simply write a statement of your preferences for treatment. You may also wish to speak to an attorney or your physician to be certain you have completed the living will in a way that your wishes will be understood and followed. You can find more information on living wills at www.uslivingwillregistry.com

What Is A Durable Power of Attorney For Health Care?

In many states, a durable power of attorney for health care is a signed, dated, and witnessed paper naming another person, such as a husband, wife, daughter, son, or close friend, as your "agent" or Proxy" to make medical decisions for you if you should become unable to make them for yourself. You can include instructions about any treatment you want or wish to avoid. Some states have specific laws allowing a health care power of attorney and provide printed forms.