Dementia and Caregiver Grief: Part 2

In a previous post, I wrote about the symptoms of dementia, and the levels of care available to aging family members. In this post, I’ll provide more information about other types of dementia besides Alzheimer’s, and provide tips for interacting with family members who are disoriented.

Alzheimer’s disease is the most common, but not the only kind of dementia that can occur later in life. Dementia is not a distinct disease on its own, but rather a cluster of symptoms that can accompany other illnesses. Dementia usually includes memory loss (especially short-term), disorientation, and diminished ability to complete independent living tasks. Dementia often starts mild and progresses to be more severe over time, and not everyone experiencing memory loss will develop dementia.

Here’s a quick overview of other dementia types most commonly seen in hospice.

Vascular dementia occurs as a result of stroke or other injury to blood vessels in the brain. The first symptom if often diminished ability to organize or plan, rather than the memory loss seen first in Alzheimer’s.

Dementia with lewy bodies will show the same characteristics of memory and cognitive problems of Alzheimer’s but also be accompanied by hallucinations and rigid movement of the body.

Mixed dementia can occur when two or more of these types occur together.

More types of dementia are described at this page of the Alzheimer’s Association, http://www.alz.org/dementia/types-of-dementia.asp.

If you or a loved one is experiencing memory loss, see your physician to determine what treatment can help. Dementia is not curable, but medications can lessen symptoms. Often, managing difficult behavior or symptoms is done without medication, through caregivers’ acknowledgment of the illness, arranging items in the environment to be the least problematic, and meeting basic daily needs.

Some families experience their loved ones with dementia as becoming child-like. Others become uncooperative or aggressive. It is alarming when a family member becomes confused, disoriented, or unable to speak. Some patients lose the ability to articulate clear words, though they continue to try. Others may string words together that don’t make sense, or respond with one word answers. Here are some tips that may help if you interact with a loved one with dementia:

1. Return eye contact. If they make eye contact with you, let them know you are present and attending to them by returning it.

2. Respond to the needs you can fulfill, like providing food, drink, changing clothes, and keeping them physically comfortable.

3. Don’t argue about reality. If they are disoriented or are fixated on something that isn’t real, gently acknowledge any feelings they are having and move on. For instance, your loved one says, “I have to go now to pick up our granddaughter, she is waiting for me”, you could respond with, “You are thinking alot about your granddaughter right now.”  

4. Keep the focus on the present. Because memory is impaired, those with dementia are not experiencing the world in the context of past and future. They are experiencing the world moment by moment.

Often this present-mindedness is difficult for family members because so much of our relationships with loved ones is based on our shared past and future. Caregivers of dementia patients have to make a fundamental shift in thinking about their loved ones as plans for the future change as a result of the illness. They often put aside their expectations to meaningfully share about memories, in an effort to meet the day to day demands of caregiving. Most caregivers do find patients have occasional “flashes” of awareness. These glimpses of the patient’s former self can be both joyous and painful for caregivers, as they appreciate the moments but also realize that they are fleeting.

Click here for a great resource with more coping strategies for behavioral problems. http://www.alz.org/alzheimers_disease_treatments_for_behavior.asp#non-drug

In Part 3 of this series on Dementia and Caregiver Grief, we will explore more about how grieving is different in these circumstances than with other types of loss.