Death and Dying Process (Alzheimer's)

Death and Dying

During the final stages of dementia due to Alzheimer's disease, an individual may lose his/her  ability to ambulate, verbally communicate, swallow, or may become totally incontinent and continue to lose weight despite nutritional supplements.  Usually people with Alzheimer's die of another problem---perhaps a stroke, or pneumonia due to aspiration. At this point, the caregiver must be aware that the only way a person can stay alive is by inserting a stomach tube that provides artificial nutritional sustenance. Caregivers may have different feelings about this intervention for religious or personal reasons.  At the end stage of Alzheimer's the use of invasive procedures such as a stomach tube, can keep the persons alive from months to years. This important decision must be made by the family member and can create an "ethical dilemma". Families, should in no way feel pressured by a medical professional to insert life sustaining interventions.
When family members are prepared with regard to the physical process of death and dying they are more able to accept death as an inevitable and peaceful process. The recent expansion of Hospice Services has done much to promote discussions about death and acceptance of withholding end-of-life medical interventions. Once a person is terminal, as determined by a physician who understands the disease process, a caregiver may decide to engage Hospice Services.  The physician must be willing to certify that a person will die within six months. If the person does not die within six months, they are not disqualified from the program.
Hospice Services are usually provided by a local Home Health Agency. Hospice services can be provided in the home, assisted living facility as well as a skilled nursing facility. When a family signs up for Hospice Benefits they agree to forgo extreme invasive procedures and agree to support procedures that alleviate pain for the person with dementia. This is known as "palliative care" or comfort measures. At the final stage of death, water and food are withheld as the individual no longer desires this. This is a part of the natural process of dying.  
Families can anticipate the final stages of death by the various physical stages a person may be going through.  Barbara Karne, a Hospice  R.N. developed a very comprehensive booklet entitled "Gone From My Sight: The Dying Experience" which delineates the various physical stages of death and dying. To obtain a booklet, contact her at the following address: Barbara Karnes, R.N., P.O. Box 335, Stillwell, Kansas, 60085, 1995.
In Karnes' booklet she describes what occurs , one-three months prior to death, one to two weeks before death, days or hours before death, and then the final minutes. This information has been extremely helpful to families and can be summarized as follows: 
One to three months prior to death 

• Withdrawal from world and people
• Decreased food intake
• Increased sleep
• Going inside self
• Less Communication

One to Two Weeks Prior to Death

• Disorientation
• Agitation
• Talking with Unseen
• Confusion
• Picking at Clothes
• Physical Changes

• Decreased blood pressure
• Pulse increase or decrease
• Color changes; pale, bluish
• Increased perspiration
• Respiration irregularities
• Congestion
• Sleeping but responding
• Complaints of body tired and heavy
• Not eating, taking little fluids
• Body temperature hot/cold

Days or Hours

• Intensification of 1-2 week signs
• Surge of energy
• Decrease in blood pressure
• Eyes glassy, tearing, half open
• Irregular breathing, stop/start
• Restlessness or no activity
• Purplish knees, feet, hands, blotchy
• Pulse weak and hard to fine
• Decreased urine output
• May wet or stool the bed

Minutes

• Fish out of water breathing
• Cannot be awakened

Advance Directives:

It is important that individuals be aware of their wishes and that  the wishes be formally documented in a legal document that is known as an "Advance Directive".  Each state has different instruments for these directives and the caregiver should contact the local medical facility to determine the appropriate document to be be used.  The Advance Directive delineates one's  wishes regarding medical treatment and appoints a surrogate decision-maker on a person's behalf.  Of course, the important aspect of the Advance Directive is to discuss end-of-life care before one becomes diagnosed with dementia or has an another debilitating illness.