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End of Life Care for Dementia Patients

There are nearly a dozen forms of dementia with a wide array of progressive symptoms. While some forms of the disease such as Huntington's and Creutzfeldt-Jakob's can progress quickly, others like Alzheimer's disease and Parkinson's disease can take years to enter into the latter stages. For these reasons, many individuals find it challenging to acknowledge that dementia is actually a terminal disease. Because most forms of dementia eventually challenge one's ability to remember things and make rational decisions, it's essential for families to come together in the early stages to help with planning for the legal, financial and medical future of the sufferer.

Solidify Advance Directives for Legal, Financial, and Healthcare Issues

Legal and medical experts recommend that a newly diagnosed person with any form of dementia move quickly to legally secure their estate and update or create any necessary health care directives. These legal documents must be prepared and notarized while the individual still has the mental capacity to make such serious decisions. Some common legal, medical and financial documents to discuss with a lawyer include:

  • A legal will declaring how one's assets will be distributed upon their death specifying care for minors, gifts, estate management and directives for final wishes such as burial arrangements.
  • A living will that gives a specific individual the legal power to act and make legal and financial decisions on the sufferer's behalf.
  • A durable power of attorney.
  • A DNR, or do not resuscitate order if so desired.
  • Any wishes concerning dialysis, blood transfusions and organ or tissue donations.

Families who are caught off guard by a sudden diagnosis or progression of dementia may suddenly discover that their loved one is beyond the point of being able to make these vital decisions. In these situations, families will need to consult with an attorney to discuss their options and the best method of recourse.

Knowing When to Seek End of Life Care for Dementia

Families often struggle with determining when it's the right time to seek outside help, as recognizing the signs of end of life can be challenging for untrained observers. Because there are so many types of dementia, it can be hard for even medical professionals to know how long a patient will live. An exception would be if the patient also suffers from a secondary life-limiting illness such as cancer. However, those only suffering from dementia often experience the following symptoms that gradually worsen as the end of life stage approaches.

  • The need for assistance with activities of daily living
  • Profound weakness
  • Reduced awareness or lack of concentration
  • Excessive drowsiness or sleeping
  • Trouble swallowing
  • Staying bed-bound
  • Exhibiting agitation, restlessness and/or disorientation
  • Gaunt appearance

Individuals in the advanced stages of dementia can exhibit these types of symptoms for months and even years, which can make it hard to determine if death is approaching. While this uncertainty makes it also challenging to decide when to seek outside help, those with several of these symptoms progressing concurrently should see a medical doctor for advice and guidance. Once it's been decided to seek end of life dementia care, you'll need to decide which type of care is right for your loved one.

Hospice Care vs. Palliative Care as End of Life Care for Dementia Patients

There are two primary dementia end of life care options: hospice care and palliative care. While these terms are often mistakenly used interchangeably, they are actually two very different types of care.

What is Hospice Care?

Hospice care is often the choice of terminally ill individuals who have chosen to no longer take medications or undergo therapy and/or treatments to prolong their life. While this type of end of life care can be arranged at a nursing home, hospital or other medical facility with round-the-clock caregivers, hospice care typically takes place within the home and relies heavily upon family members for care. Hospice care arrangements are typically made according to the needs of families and the patients and are guided by a team of professionals that includes social workers, medical physicians, nurses, and other care providers.

What is Palliative Care?

Palliative care typically takes place in extended care facilities, hospitals, or nursing homes that offer end of life care. A team of medical professionals and caregivers oversee the needs of dementia patients in the final stages of life. However, palliative care is not only for individuals seeking end of life care, and there are some patients who choose to receive their care within the comfort of their home. Regardless of the type of care you choose, there are a number of benefits to seeking outside assistance to ensure your loved one's comfort in their final days.

The Benefits of Dementia End of Life Care

End of life care is designed to specifically support and address the needs of those with life-limiting conditions such as dementia related diseases. Dementia end of life care focuses on helping patients stay safe, pain-free and as comfortable as possible during their final months, weeks, or days of life. Both hospice and palliative caregivers and support staff are typically expected to perform duties including:

  • Assisting with activities of daily living such as eating and hygiene.
  • Helping with cooking, cleaning and other light housekeeping chores.
  • Helping patients with pain management and other symptoms.
  • Take patient's status and vital signs and document any increasing symptoms.
  • Support the family and patient's relationships and spiritual beliefs.
  • Providing support to the family after their loved one passes.
  • Helping families and patients prepare for their final arrangements.

Ultimately, getting end of life care can help families cope through what is a very trying time for both themselves and their loved one. If you have concerns, about the cost of end of life care for dementia patients, read on to explore some options.

How to Pay for End of Life Care for Dementia Patients

Paying for Hospice Care

It's essential to check on policy limitations concerning coverage for hospice care for dementia patients, and one of the primary requirements that is standard in most policies is that they are both terminally ill and are within six months of death. A social worker employed by your chosen hospice provider is likely to help you determine your coverage and financial options during a consultation. These professionals can also help you apply for veteran, state or federal benefits (if you qualify, are economically disadvantaged or lack adequate insurance coverage}. The good news is, that Medicare covers many hospice programs, which are typically all-inclusive when it comes to pricing.

Paying for Palliative Care

Because palliative care for dementia patients is generally administered within a medial facility, it's likely to be covered by traditional medical insurance, Medicare, Medicaid, V.A. benefits and supplemental policies. A primary difference between hospice and palliative care is that there are no time limitations on palliative care, and patients can receive services at any stage of any illness—terminal or not.

How to Find End of Life Dementia Care for Seniors

Explore dementia end of life caregiver options near you in our directory or call us on our helpline.

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Since graduating from Harvard with an honors degree in Statistics, Jeff has been creating content in print, online, and on television. Much of his work has been dedicated to informing seniors on how to live better lives. As Editor-in-Chief of the personal… Learn More About Jeff Hoyt

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