Late-stage dementia: A long journey of care

For patients living with dementia and families coping with the challenges facing their loved one, many questions have to be addressed by knowledgeable and compassionate healthcare providers. Unlike some medical conditions characterized by clear onsets and hopefully adequate resolutions, once dementia is diagnosed, it becomes apparent to those who know what is entailed that there will be a long journey from the time of diagnosis until the end. Hence, knowledge and emotional fortitude are necessary for all those involved in the long and often undulating course of the disease. Families are generally in the forefront of that challenge.

For most who are confronted with a diagnosis of dementia, the initial response is often a combination of denial and disbelief, as well as a quest for potentially reversible causes or aggravating factors. Some patients and families go from one physician to another trying to determine whether or not the diagnosis is “certain.” Often the patient gains little insight or understanding of the condition. This can lead to many problems, as the person is not aware of the deficiencies in cognition and function and may be very upset as steps are taken, for example, to assure their safety as well as the safety of others. This point is often dramatically brought home to families when it becomes necessary to report the diagnosis of dementia to the motor vehicle bureau, usually resulting in a loss of one’s driver’s license. This may cause a terrible loss of both self-esteem and sense of independence in the person living with dementia. The decision often causes strife in the family, as the patient may not understand why the step has been taken and may accuse the family of being responsible for it, especially when the medical appointment was arranged by the family in the first place.

There is usually a very slow, progressive decline in function, with the family members undertaking all kinds of steps to increase care and attention so that life can go on. For much of this time, the person suffering from dementia can participate in many activities of life and find enjoyment in some aspects of life and relationships.

A common question often raised by family members is, “When is the right time or best time to discuss end-of-life decisions or preferences?” In some ways, the optimal time is when there is nothing wrong with the person so that the discussion is dispassionate and almost theoretical, as if one were talking about a third person, even though it is meant to be personalized. It might be asked as, “What would you prefer to have done should you be in the following state of function?” Sometimes it is hard for a person to imagine such a state, but many times there has been a situation with another family member or friend. If this situation can be referred to as an example, it might become clear to the person that what was done to that other person represents a state or decision that they would either accept or reject.

Excerpted from Late Stage Dementia: Promoting Comfort, Compassion and Care by Dr. Michael Gordon with Natalie Baker, IUniverse Press,

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