While intellectually we know that someday we will die, most of us live in a state of denial that it will actually happen to us, and that denial can extend to our loved ones’ lives as well. Consequently, if loved ones have dementia that is irreversible, such as Alzheimer’s Disease, we may understand that they have a terminal illness, but avoid thinking about what will happen toward the end of their lives. This denial can help us to focus on the good that we still have, but it can leave us unprepared to deal with the realities of End-Stage Dementia. Some good advice I heard many years ago is, “Plan for the worst, but hope for the best.” I think this is a very good recommendation and it presents a balanced way to approach End-Stage Dementia.

If we think about dementia as being caused by diseases of the brain itself, it follows that as different parts of the brain succumb to the disease process, the bodily functions controlled by that part of the brain will be affected. Professionals may differ in how they describe End-Stage Dementia, but the following are common features of End-Stage Dementia: markedly decreased cognitive function, the need for assistance with any kind of activity, and the loss of the ability to control normal bodily functions. Let’s look at each of these areas and think about how to “plan for the worst,” even while we “hope for the best.”

Cognitive Decline: We need to be prepared for the time when our loved one may no longer recognize who we are, or even be able to say an intelligible word. Without feedback we cannot know what will be understood, but that does not mean we should stop talking with them. At this point it is good to identify yourself each time they see you, “Hi Mom, it’s your son, John.” By using a calm, friendly voice, your tone can communicate that they are safe and loved. It may be up to you to carry the conversation, but having someone talk with them can help them to feel valued. You may find that by talking about the “old times” your loved one may be more attentive. This is because as dementia progresses, memory reverts to earlier and earlier times. Since music is processed in a different area of the bran than speech is, you may want to try playing or singing music from your loved one’s childhood and early adult life. Some people who cannot speak still can sing, and you may even get a smile when some song evokes a good memory from the distant past.

The Need for Total Assistance: While dealing with cognitive decline can be emotionally draining, providing total assistance can be physically draining. This is not the time to try to do everything yourself. No matter how much you love someone, you cannot provide 24/7 care without dire consequences to your own health. This is often the point where a loved one with dementia goes into a care facility. But even if the person stays home, there needs to be enough caregiver staffing to provide 24/7 care, whether this is from a combination of family and friends or by employing caregivers.

This also may be the time when a loved one may benefit from Hospice Care. Hospice care is for terminally ill people who would like their care focused on comfort, rather than life-prolonging treatments. A physician can order hospice care anytime he or she feels a person is likely to have six months or less to live. Unfortunately, many referrals to hospice are not made until the person has hours or days to live, and the person and the family miss much of the physical, emotional, and spiritual support that hospice provides.

Loss of Bodily Functions: The ability to walk, feed oneself, control bowel and bladder, and swallow without aspirating food or liquids into the lungs are all functions which can be lost during End-Stage Dementia. The inability to walk, and sometimes even change positions, can lead to skin breakdown from sitting or lying in one position too long, and skin breakdown can lead to open areas that are prone to becoming infected. A good rule of thumb is to make sure your loved one has a position change every two hours. The inability to eat by oneself means someone has to physically feed the individual. Poor appetite may accompany this, so the caregiver needs to keep track of what and how much is eaten and drunk. Otherwise, the person may suffer from dehydration and malnutrition, which can worsen other medical conditions. Incontinence can lead to skin breakdown and infection if the person is not kept clean. However, swallowing problems may be the most problematic. If someone aspirates food or liquids, that person likely will develop pneumonia, which in an older, frail person can be life-threatening. Caregivers need to be alert for signs of coughing when eating or drinking, which can be a sign of aspiration. A Speech Therapist is qualified to evaluate swallowing problems, so a physician may refer your loved one to a Speech Therapist if swallowing problems are suspected. Sometimes proper positioning of the head when swallowing helps. Sometimes thickened liquids and either a mechanical soft or pureed diet help. But sometimes the only way to minimize the risk of aspiration is a feeding tube. (Even with a feeding tube people can sometimes aspirate their own saliva.) Hopefully, your loved one will have stated his or her thoughts on tube feedings in an Advance Directive (Living Will and/or Durable Healthcare Power of Attorney) prior to or early in the development of the dementia. Without an Advance Directive, the decision about a feeding tube will fall to the next-of-kin. If you find yourself being asked to make this decision for a loved one, the best approach is to take everything you know about that person and give the answer you feel your loved one would give if he or she were able to make the decision at that point in time.

End-Stage Dementia is a difficult time for both the affected person and the family. By becoming aware of the care issues that are part of End-Stage Dementia well in advance of that time, both you and your loved one can be prepared to meet the challenges you will face.

Written by John W. Reese, M.S., CDP, Elder Care Coordinator, Keystone Elder Law P.C.