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What to Expect When You’re Caregiving

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Anyone who has cared for a loved one with Alzheimer’s knows just how stressful and unpredictable the experience can be. Yet most people who care for a family member with the disease have little preparation or experience when they begin their caregiving journey. A new interactive tool from Caring.com, a Web site dedicated to caregiving concerns, aims to ease the process by providing support and advice geared towards the progressive downward course of Alzheimer’s and other types of dementia.

The free program, called Steps & Stages, is an interactive guide that dispenses caregiver guidance customized to the particular stage of Alzheimer’s they are facing. “Caring.com’s Steps & Stages provides clear actions steps tailored to your loved one’s stage of Alzheimer’s,” notes Cory Ryan, Vice President of the Fisher Center for Alzheimer’s Research Foundation. “The action steps guide family caregivers right now, without having to wait days or weeks to get helpful advice.”

At the Web site, at http://www.caring.com/steps-stages/alzheimers, the caregiver first enters the patient’s name, age and family relationship. He or she then checks off a series of boxes about specific symptoms, such as repeating questions or stories, forgetting to fill prescriptions, an inability to remember who just visited, confusing long-ago memories with recent events, and identifying friends and family members.

The program also asks follow-up questions about how often memory lapses and other problems occur, and how well a loved one can handle personal care, like dressing or washing. Mood issues like anger and aggression, a common problem as Alzheimer’s progresses, are also addressed.

The tool then ranks patients according to their stage of illness, be it early, moderate or severe. Each of these stages is, in turn, divided into early, mid and late sub-stages.

A caregiver guide provides specific tips on “What to do” about specific problems, like managing personal care, repeating questions, forgetting appointments or emotional outbursts. Tips on prescription medication errors, for example, include suggestions like setting up automatic refills, arranging for home delivery, using day-of-the-week dispensers, making pill-taking part of the daily routine, and bringing in all medications to doctor’s appointments for a regular “brown bag” review.

Caregivers also have the option of receiving a free e-mail newsletter about what to expect, measures to take, and tips on coping and caring for someone with Alzheimer’s. The tool also includes a community feature called Stage Groups, where caregivers dealing with similar problems can talk to one another and share tips and support.

As new symptoms of Alzheimer’s arise, caregivers can update their Care Guide, and the information and advice changes dynamically. The program was modeled on another popular Web site the creators had developed, BabyCenter.com, which is geared toward new parents.

Research conducted by Caring.com shows that nearly 50 percent of families caring for a loved one with Alzheimer’s do not know what stage of the illness their family member is in. This uncertainty makes it very difficult to make important decisions on a daily basis and properly care for a mother, father or other close friend or relative with Alzheimer’s. For most of the more than 1,100 caregivers the company surveyed, a diagnosis of Alzheimer’s came a year or more after memory loss and other symptoms first appeared.

“Caring.com’s Steps & Stages is geared toward my mom’s stage of Alzheimer’s, so I can get information specific to what I’m experiencing,” said one of the site’s users, Martha Huggart from Raymond, Mississippi. “The tips are very helpful, both in helping me know how to take care of my mom and in reminding me to take care of myself,” she added.

Medical advisors on the site include Leslie Kernisan, M.D., MPH, a practicing geriatrician and clinical instructor at the University of California, San Francisco, geriatrics division, and Ken Robbins, M.D., a geriatric psychiatrist and clinical professor of psychiatry at the University of Wisconsin in Madison. Other experts who provided review include Lisa Gwyther, MSW, associate professor in psychiatry at Duke University Medical Center and coauthor of “The Alzheimer’s Action Plan: A Family Guide.”

The Steps & Stages tool is available on Caring.com at http://www.caring.com/steps-stages/alzheimers, along with the Stage Assessment, Custom Care Guide and weekly e-mail newsletter signup. Additional community and content features are planned in the coming months.

By Alzinfo.org, The Alzheimer’s Information Site. Reviewed by William J. Netzer, Ph.D., Fisher Center for Alzheimer’s Research Foundation at The Rockefeller University.

10Add a Comment

Gail

October 29, 2010 at 12:07 am

I wish this had been available to me sooner. My husband passed away in January 2010 due to congestive heart failure and was also in the late stages of Alzheimer’s. He had many angry outbursts, aggressive behavior, loss of social skills, etc. It would have been so helpful to have had this online service in addition to the Alzheimer’s Association site.

Dorothy Adams

October 29, 2010 at 12:52 am

My husband was diagnosed in the fall of 2009. I believe he falls into the 3rd stage judging by his inability to remember his birthday, who is President and cannot make a clock set at 3 PM.

Yvonne Crump

October 29, 2010 at 3:49 am

My darling husband has been in the final stage,ie unable to walk talk feed etc. for over 2 years now. He is a perfect patient, never complains,loves his food maybe on auto pilot and I employ caregivers 24/7 with myself slotted in to the roster solidly. His wheel-chair outings, walking only, seem to give understanding and peace. Can anyone give me any indication as to what to expect for the very end, eg. can we manage this as well, and any sort of time frame for caregiver employment.

Mary Hanrahan

October 29, 2010 at 3:03 am

My sister-in-Law lives alone and has been diagnosed with Alzheimers!I feel she should have some help..e.g meals on wheels, go to a day care center, or some home help…her brother and his family have power of attorney and he feels that the time is not right as she is very suspicious of strange prople!
what can i do to help her/

Martha Windham

October 29, 2010 at 9:38 am

I’m a caregiver for my husband. He can still all the things like shaving, dressing,
He just forgets where we are going or what time is it etc. but it fairly easy to put up with this. I worry when he leaves the house and I don’t know where he is.

angela davies

October 29, 2010 at 7:23 pm

My husband was diagnosed with alzheimers 4 years ago. My biggest difficulty at the moment and has been for the last year is his terrible depression. He is taking 15mg of escitalopram but it has made no differance. He crys so much and even in our home which is now so warm he is always so cold. day and night. I have had to leave cafes and restaurants as I can see he is about to cry and Im getting to my wits end. I know he and I both need help for this but dont know where to turn, Friends and family are always helpful but nobody could understand what this is doing to us.

Ernesto H Guido

October 29, 2010 at 10:32 pm

Congratulations for your excellent job.I am wondering why you do not have a Neurologist in your Medical Advisors group.

EHG

C.Ann

November 7, 2010 at 9:40 am

Angela I feel so sorry for you! I took care of my mom for a yr and a half. One year by myself and 6 mos with Hospice Care. I think I cried every day that I took care of mom, and I am so grateful for Hospice. Have you called them? They have nurses, aides, chaplains, family social workers. I highly recommend checking into it. If nothing else they can give you respite for you can just have some time to yourself. The aide will sit with your husband, bathe him, feed him – whatever is needed, just to give you some hours a couple of times a week for yourself. Please check them out – they bill his insurance – mom’s was Medicare and we never saw a bill from them.

Ann Gallagher

August 2, 2011 at 10:33 am

Dear friends I am sorry that Alzheimer’s has touched your lives.It is such a devastating disease.

I was a care giver for my beloved and he passed in 2005. I am a moderator on a AD Board and wish to invite you there. You will find a caring family of friends ready to give you caring support and with much uderstanding.

There are forums to educate you on the disease and to guide you to a better understanding of your role as a care giver to your loved one.

Please feel welcomed and share how we might help you..we truly care about you and your dear loved one..you don’t have to travel this difficult journey alone…alice

Alzheimers.Proboards32.com

elizabeth santos

November 6, 2011 at 9:18 am

Alzheimers is a devastating disesase, there is no cure and the cost is soaring, but it won’t help if we will think how hard it is, EDUCATION IS THE KEY, the more we know about it,how to handle it and support from others the more we can go on…..it’s not easy but something we have to do. It is a Public Healt Crisis at he moment if don’t do anything about it, It will be aPublic Health EPIDEMIC, we need more help from the government for research and public awarensss.

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