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Information for End-of-Life Choices: Caring for End-Stage Dementia

Dementia is the loss of cognitive function that occurs with certain brain conditions. It affects memory and reasoning, making it harder for patients to think clearly and communicate. As dementia slowly worsens, patients become increasingly disabled. Over time, they lose their ability to care for themselves. If your Veteran has now progressed to end-stage (advanced) dementia, it may help to know what to expect and plan for what lies ahead.

Understanding End-Stage Dementia

Symptoms are different for each patient. But, in general, dementia has three basic stages. Each stage can last a few months to years. End-stage dementia is the last, and often most stressful, stage for both patients and families. Once this point is reached, the Veteran’s brain function will have severely declined. This will affect how the rest of the Veteran’s body functions. With end-stage dementia, the Veteran may no longer:

  • Recognize family members and friends.

  • Reason or have sound judgment.

  • Speak or understand language.

  • Have bowel and bladder control.

  • Eat or swallow safely.

  • Walk safely. He or she may need a wheelchair or be bed-bound.

  • Perform normal tasks of daily living. He or she will need constant care.

Revisiting Your Veteran’s Care Plan

Because of the extent of the physical and mental changes that can occur with end-stage dementia, your Veteran’s goals of care and treatment plan may need to change. The Veteran’s healthcare team can help guide you through this process. When meeting with the team, you and others involved in the Veteran’s care may want to ask:

  • How much longer does the Veteran have to live?

  • How can symptoms be managed at this time?

  • What treatments might be helpful?

  • What are the risks and benefits of these treatments?

  • How will these treatments help with overall health and comfort?

These questions may lead to further discussions about end-of-life care. Although these discussions can be difficult, remember that the goal is to provide the quality of life and care that your Veteran would have wanted. Think about conversations you may have had with the Veteran when he/she shared the kind of treatments they would want at the end of life. Consider their personal values or faith. Also ask for advice from those who share those values.

Considering Care and Placement Options

With end-stage dementia, the Veteran’s caregiving needs will greatly increase. If you are still caring for the Veteran at home, you may want to explore other care options at this time. These may include: home-based primary care, homemaker and home health aide, respite, adult day health care, nursing home, or hospice care. Caregiver support is an essential part of all of these services.

Home and community based services include:

  • Adult Day Health Care

  • Home-Based Primary Care

  • Homemaker/Home Health Aide

  • Hospice and Palliative Care

  • Program of All-Inclusive Care for the Elderly (PACE)

  • Respite Care

  • Skilled Home Health Care

  • Telehealth

  • Veteran-Directed Home and Community Based Services

For more information about these services, visit the Office of Geriatrics and Extended Care Website: http://www.va.gov/GERIATRICS/Guide/LongTermCare/Home_and_Community_Based_Services.asp

  • Placement in a nursing home or skilled nursing facility. This type of facility assists with tasks of daily living. It also provides constant medical care. Trained doctors, skilled nurses, and therapists are available to assist with care.

  • Hospice care. Hospice and Palliative Care provides treatment that relieves suffering and helps to control symptoms in a way that respects the Veteran’s personal, cultural, and religious beliefs and practices. Hospice also provides grief counseling to the Veteran’s family. The Veteran and family are assessed by a care team and a plan of care is developed to meet medical, social, spiritual and psychological needs. This care is available to Veterans in their home, community, outpatient or inpatient settings.

Deciding whether to move the Veteran to a facility or to hospice and end-of-life care can be upsetting. But know that you’re not alone in this process. The Veteran’s healthcare team can help address your questions and concerns.

Getting Support

Coping with your loved one’s condition can wear you down over time. Grief, anger, fear, and worry—these are all normal emotions. Rather than dealing with your emotions alone, it may help to reach out to others. Talking to other family members and friends may help. Joining a support group for families and caregivers of loved ones with dementia may also help. You can seek support from your loved one’s healthcare team as well. You can also contact the VA Caregiver Support website (http://www.caregiver.va.gov) or VA Caregiver Support Hotline (1-855-260-3274) to find other resources within your community.

Author: StayWell Custom Communications
Last Annual Review Date: 9/14/2012
Copyright © The StayWell Company, LLC. except where otherwise noted.
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