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November 2013

Caregivers Setting Boundaries With Parents

People detach by learning to understand  that they can't control their parents (or spouse), so they stop trying. Sometimes, just this step makes a difference, as the person who has been pushing your buttons - making you angry because he or she knows your triggers – starts to see it doesn't work. Detaching with love means that you affirm that you love the person, but will no longer tolerate being treated with meanness or disrespect.

Read more about detaching while still loving:

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Caregiving for Loved Ones with Dementia Research Study

Below is information about a study with a little different twist. If you are caring for a loved one who has dementia, you may want to help out with this research.  Carol

Volunteers wanted for a research study!
My name is Laura Foran Lewis and I am a doctoral student in the School of Nursing at the University of Connecticut.  I am looking for individuals who may be willing to participate in a research study about caregivers.  The purpose of this research study is to explore the experience of caregiving for a loved one with dementia (including Alzheimer’s disease) at the end of life.  To participate in this study, you must have taken care of someone with dementia who passed away in the last 10 years.  You may have cared for them at home, or they may have been in assisted living or in a nursing home. Participation includes answering a few questions online about your experience as a caregiver.  To find out more about this study or to participate, please see the study website: www.caregiverstudy.weebly.com

Thank you for your consideration!

Laura Lewis, RN, MSN, Student Investigator
Principal Investigator: Cheryl Beck, DNSc, CNM, FAAN

Have a Realistic Holiday Experience as a Caregiver

...Few of us can measure up to the fantasy - caregivers least of all. There's so much denial of today's reality in these images resurrected each holiday and thrown at us by every means, from advertisements to blockbuster movies. These images feed expectations that are impossible to meet. The "average" family is vastly different than the average family of yore. Today's families are often a patchwork of children, step-children, step-in-laws, step-siblings and elders of varying degrees of relationship and health. Add to that the fact that people marry later and often have children at an older age, and you've got a package that often includes young children, teenagers, young adults,  forty-something caregivers, a parent who's had a stroke or two, and maybe one with dementia.

Read more about having a realistic holiday experience as a caregiver:

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Educating Grandchildren and Their Friends About Alzheimer’s and Dementia

Pre-teens and teenagers tend to want to fit in with their peers. Most kids, during those years, are keenly aware of any differences between their family and that of their friends. How do these kids cope when a grandparent or a parent has Alzheimer’s disease or another dementia?

Read more about how children can learn to cope with their grandparent's dementia:

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Moving Parents with Dementia Closer to Family

Dear Carol:  My parents both have dementia, though Mom is declining faster than Dad. They live in the home I grew up in, 700 miles away from my current home. During the last years, their old neighbors have moved and most of their friends are ill or deceased. I want to move them into a nice memory center close to my home. When I talked to Dad a month ago, he said that would be fine but now he doesn’t remember anything about our conversation.

Read more about the difficulties of moving a parent across country:

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Alzheimer’s Prevention Registry Personal Way to Be Involved

Research7Alzheimer’s disease is the only terminal disease out of the top 10 that cannot be cured. The disease affects more than 5.2 million Americans, with a new case diagnosed every 68 seconds. Yet, there is hope. This hope rests on the willingness of people to volunteer for clinical trials, which has just become easier due to the Alzheimer's Prevention Registry.

Led by Banner Alzheimer’s Institute (BAI) as part of a new era of Alzheimer’s prevention research, the Alzheimer’s Prevention Registry is an online community of people willing to be involved in studies that will eventually help prevent the disease. The Registry provides a platform for education and advocacy and connects members with applicable clinical trials that are often delayed by lack of volunteers. By speeding that process, the Registry is helping critical prevention research get under way faster, and offers a way for anyone touched by Alzheimer’s – and we all are – to take action.

With so many people interested in Alzheimer’s disease, why don’t more people get involved in studies? Often, people wonder about the time commitment. They also worry about the privacy of their health information that they are required to give and whether or not their health insurance will be affected by participating in a trial – even if they don’t have Alzheimer’s disease. These are valid concerns.

However the registry is simply a way to keep you informed about studies and other breaking news about Alzheimer’s. It’s up to you – the participant – whether or not you ever volunteer for a study. The basic information you are asked to provide when you sign on is only information that you’d provide to register on nearly any Internet site. You decide if or when a study appeals to you enough to become more involved.

Currently, BAI, in collaboration with the National Institutes of Health (NIH), is conducting a major prevention trial to evaluate a treatment in cognitively healthy older adults who are at the highest known genetic risk for developing Alzheimer’s disease. These scientists are working to identify possible biological markers that could eventually lead to early intervention long before symptoms occur.

What we do for others is part of the legacy we leave as human beings. Any information gained from a study moves the whole body of knowledge about Alzheimer’s disease forward. That means that you, as a contributor to this body of knowledge, are leaving an invaluable legacy that will help people in the future. If the only contribution you decide to make is to take a five minute survey, you’ve still contributed. Please go to www.endalznow.org for more information.



Full disclosure: While BAI is a non-profit agency and I, as an eldercare writer, often post about new studies and how to gain information about them, I was compensated for this particular post.

Dad’s death always news to Mom

Dear Carol: My mom is in a nursing home because of kidney and lung problems plus mid-stage Alzheimer’s. Dad seemed to be doing well at home but had a sudden heart attack and died. It’s been a difficult, sad time for us all, but the worst part now is that Mom can’t or won’t believe he died. We took her to the funeral and did all we could to comfort her, but it’s like her mind won’t grasp the loss. How do we handle this? It’s horrible for the whole family. – Susan

Telling Loved One That It's Time for Hospice

...A brief time after Dad's death, Mom's own terminal condition required hospice care in order to control her pain. She had told me numerous times that she was tired of living and ready to "go." Yet, I believe it still was hard for her to accept that she needed hospice care and what that meant.

Read more about how to help some accept that it's time for better pain management under hospice:

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How Not to Argue With Mom

DEAR CAROL: My mom has middle stage Alzheimer’s and I find that I often treat her like a misbehaving child. That’s not my intention. I respect her as my mother. But I have to say “no” to her when she insists she can drive the car and when she wants to buy expensive things she sees on TV ads or in catalogues. We even argue about what she wears. She says I’m bossy. I seem to be doing something wrong. How do people cope with this? - Ginny

Read more about how not to argue with someone who has dementia:

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Alzheimer’s Clinical Trials Need Volunteers to Move Forward

TestTubesMany researchers, convinced that Alzheimer’s disease begins in the brain decades before symptoms appear, are conducting clinical studies focused on stopping the disease at this very early stage. Yet these studies lack participants. One reason that these studies lack participants is that it’s simply not intuitive to volunteer for an Alzheimer’s study if you have no symptoms. However, even if people are interested in volunteering, they worry about the time involved, the privacy of their information and whether their health insurance rates will rise if they do participate.

Read more about becoming involved in Alzheimer's clinical trials:

Purchase Minding Our Elders: Caregivers Share Their Personal Stories – paperback or ebook