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The End of the Journey

In the last several days, a number of people have found their way to this site by using search engines to find out about end-stage dementia.  So I thought it was time to speak to that here.

Eventually, nearly everyone who has dementia faces that final journey we call death.  There are typically three ways that persons with dementia die.  They succumb to complications of the dementia itself, when the brain deteriorates to the point where it can no longer sustain life.  Often, but not always, this takes the form of an inability to swallow, causing the person to choke or to develop pneumonia.  Or a person may die from an illness that has nothing to do with dementia. For instance, an elderly person with Alzheimer’s disease may die from complications of congestive heart failure.  And, lastly, the person with dementia may die due to an interaction of cognitive and physical factors.  An example of this may be a person with Lewy Body Dementia may forget to take prescribed medication to control his high blood pressure or diabetes.

Different forms of dementia have varying life expectancies.  All persons with dementia will progress through the same basic stages, albeit at different speeds.  A person with Alzheimer’s disease will typically live around eight years from onset of the disease, although they may live as long as 10-15 years.  However, a person with Creutzfeldt-Jacob Disease usually survives for a much shorter period of time.  Those in the final stages will experience similar symptoms as those who struggle with any terminal illness, such as cancer.

For some time, there has been more attention given to palliative care for those who have cancer and some other progressive diseases.  However, the needs of people with dementia have long been overlooked — at least until recently.  This could be for a variety of reasons, including the fact that people in the latter stages of dementia have often lost the ability to make decisions about what they want, and to communicate those wishes to caregivers.  Too, those with dementia can be in the latter stages of the disease for several years.  It is only now being realized that palliative care for those with dementia is an area in need of much more research.

In the latter stages of dementia, memory loss will usually be quite pronounced.  They may have difficulty recognizing familiar persons or objects and places.  They may believe they are living in the past, and may actually search for something from another time.  This may be indicative of something that the person feels is unfinished, and is compelled to try to complete.  This can be a good time to talk to the person, seeking to reassure her through reminiscing.  At the end, she may still be able to respond to a touch, a favorite song, or familiar scents.

It will be increasingly difficult for the person with dementia to understand what is said to him, and to speak to others in return.  However, even when he is no longer able to speak, he will retain the power to use non-verbal forms of communication.  I like to tell the families of my patients that Dad can no longer speak our language; we need to learn his.  This is where spending time with the person helps tremendously.  Look for a furrowed brow that says the person is in pain, or the way he relaxes when you rub his back just so.  Or take note of how he eats more when a favorite grand-daughter feeds him.  Sometimes, just sitting together in silence is enough.

Often the person in the latter stages of dementia will show a reduction in appetite, and lose weight.  Sometimes this is due to an inability to recognize feelings of hunger, or to know how to respond to those feelings.  At other times, the muscles used in chewing and swallowing food may actually be malfunctioning — sometimes due to the deterioration of those parts of the brain that control them.  The person may choke on food, or develop pneumonia.  A speech pathologist can help determine the causes of these problems, and can recommend changes in food and liquid or strategies that will help the person consume them more safely.

As they near the end of life, persons with dementia will gradually lose the ability to walk and to take part in their own care.  At first, they may seem slow or clumsy, moving with a shuffling gait or dropping things.  Here is where a physical therapist and an occupational therapist can help.  Often it is possible to allow a person to use adaptive equipment, such as a fork with a built-up handle, or a raised toilet seat, to allow him to maintain a level of independence longer.  Eventually, though, the person will become largely confined to a bed or a chair, and may sleep most of the time.

When the person does reach the stage where they remain in bed or a chair most of the time, there are some additional health concerns that arise.  Pressure sores or contractures may develop if he is allowed to stay in one position too long.  These can predispose him to pain and infection.  Other problems that can result from immobility include infections and blood clots in the lungs.  A physical therapist can help devise a regimen of gentle exercise to keep such problems from developing.

There are also some medications that may prove helpful at this time.  The person may be prone to agitation, or restlessness, for example.  Pain relief may also be necessary.  However, these may also produce undesirable side effects.  Often it becomes necessary to decide which is worse — the agitation or the sleepiness that medication might produce.

It is important to anticipate some of these problems, and to discuss them while the person with dementia is still able to make her wishes known.  Make time to sit down and have a meaningful talk with your loved one, or a number of such talks, and put her wishes down on paper.  Be sure to consider financial and legal matters as well.  But, above all, make sure that the person knows that you will be there at the end, making sure that she dies with dignity and surrounded by love.

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