An Interview With Jacqueline Marcell

Jacqueline Marcell cares for her father with Alzheimer's Disease. She has found that a combined approach of proper medication, tough-love and behavior modification has helped her to deal with her father's aggressive behavior. She is the author of "Elder Rage or Take My Father… Please!" On April 26, 2001, she took some time to answer some questions about the management of problem behaviors and the challenges of caring for one's parents:

ElderCare Online: All too often families see a diagnosis of Alzheimer’s Disease or dementia as a death sentence. How can we provide “the good life” to our loved ones after they have been diagnosed?

Jacqueline: There are three FDA approved medications (Exelon, Aricept, and Reminyl), which can slow dementia down by 2-4 years. There are three stages of dementia. Stage One (2-4 years) is mild but with one of these medications it may be lengthened an extra 2-4 years. Stage Two (2-10 years) usually requires full-time care. Stage Three (1-3 years) results in death. By keeping the person in Stage One years longer, less care will be required, saving families heartache and money. Statistically families wait 4 years before they reach out for help, usually after a crisis, but by then the loved one has progressed into Stage Two. Early diagnosis is the key. The first time subtle intermittent warning signs surface, such as asking the same question over and over, it is time to get a correct diagnosis by a geriatric dementia specialist. Treatable depression and nutritional deficiencies can mask themselves as dementia, so it is essential to get an accurate diagnosis by a specialist. The Alzheimer's Association can refer to specialists in specific areas. Then getting loved ones into Adult Day Care gives them something to do all day and it will be the best thing for them and the family.

ECO: The all-consuming nature of dementia-caregiving can take its toll on even the most “sane” individual. Where did you find the strength and stamina to carry on? Humor? Religion? Fantasy?

Jacqueline: My dedication to my parents kept me going. They had always been there for me, sacrificed for me, molded me, and I could not walk away. The perseverance and determination that I inherited and learned from my father, turned out to be the keys to turning him around.

ECO: How does one modify the negative behaviors of an individual with dementia while maintaining the individual’s dignity?

Jacqueline: Once the brain chemistry in properly balanced for the dementia, probable depression and possible aggression, it is possible to implement tough-love behavior modification of a difficult elder. Rewards and consequences are the basis. By being 100% consistent, never rewarding bad behavior, only rewarding good behavior, life-long behavior patterns can be changed, even on someone with Stage One or Stage Two dementia. If the dementia has progressed to Stage Three, behavior modification will not be possible. Success breeds self-esteem and as they are rewarded with praise, affection, attention, and even extra desert for good behavior, more will occur. If there is no "pay-off" for the bad behavior it will eventually lessen. Demented does not mean stupid. It means that life-long behavior patterns are used to hold onto control and manipulative behaviors can become distorted and even more illogical and irrational than ever before.

ECO: So often we use the general term “loved one” to refer to the person we are caring for. How do you stay positive about your relationship with the individual in the face of so many degradations and challenges? What happens when you find that you really don’t love him/her due to the burden of present circumstances or the scars of past wrongs?

Jacqueline: I recommend making a list of all the good things your loved one has done for you and all the bad things that have happened to them in their life. By visualizing their brain cells short-circuiting and unable to think clearly, it is possible to develop an emotional shift and see them as a complex medical puzzle to figure out. Getting into a support group will help tremendously as being around other who are going through it will take away the feeling of being so alone and solutions will present themselves.

ECO: What is the key to having a good relationship with the rest of your support team? Do you have any recommendations to give caregivers who are having trouble with hired assistance?

Jacqueline: When you find a good caregiver you have found gold. It is very hard to find someone to do the long list of caregiving requirements. Write all chores down, praise them, pay them well, and allow for a learning curve. You may be asking them to change diapers while being a psychologist in the trenches, may times trying to manage a "challenging" elder.

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