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Ginzler: Alzheimer's Caregiving

Understand the signs and get tips on coping.

Alzheimer's is really tough on families with loved ones who have the incurable disease. Unlike other progressive, debilitating conditions, Alzheimer's attacks the mind, while the body also diminishes. Dementia causes your loved one to gradually lose both short- and long-term memory, although short-term is generally the first to go. This means at some point, they won't be able to remember how to tie their shoes, brush their teeth, wash the dishes, or recall the names of their grandchildren.

There are currently 5.3 million Americans living with the disease, and the numbers are growing rapidly. Currently, every 70 seconds, someone in America develops Alzheimer's; by 2050, the rate will increase to every 33 seconds. These trends indicate that by next year, nearly a half a million new cases will be diagnosed, and that number will double to nearly a million new cases annually by 2050.

A comprehensive source of information on Alzheimer's and related dementias is the Alzheimer's Association Web site. Their 2009 Alzheimer's  Disease Facts and Figures documents the growth of the disease and the significant financial and personal costs borne by government and families. To me, two of the report's most telling statistics are:

  • Family members provide care at home for about 70 percent of people with the disease. Nearly 10 million caregivers provided 8.5 billion hours of unpaid care in 2008, which translates into about $94 billion of work.
  • Health care costs for individuals with Alzheimer's and other dementias are three times higher than for others who are age 65+ and don't have dementia problems.

Maria Shriver, wife of California Gov. Arnold Schwarzenegger, has a father with Alzheimer's. She recently summed up our situation very well: "The emotional, spiritual, and financial cost of this disease is mind-boggling to the nation."

Understanding the Warning Signs

Many Baby Boomers are currently worried that their aging parents may succumb to Alzheimer's. And as they age, they worry about themselves as well. It is important to note that for the vast majority of people, genetics is NOT a risk factor for developing Alzheimer's.

So what are the signs you should be aware of? Directly from the Alzheimer's Association, here they are:

10 Warning Signs of Alzheimer's

1. Memory loss

2. Difficulty performing familiar tasks

3. Problems with language

4. Disorientation to time and place

5. Poor or decreased judgment

6. Problems with abstract thinking

7. Misplacing things

8. Changes in mood or behavior

9. Changes in personality

         10.  Loss of initiative

Now let me say, as we age, everyone experiences these problems occasionally. I must admit that I misplaced a few of my notes when composing this column! So the key to understanding the warning signs is to distinguish between "normal" age-related memory change and more extensive problems. Again, the Alzheimer's Web site is a wonderful resource for guidance on making this distinction. For instance, it notes that someone with Alzheimer's "forgets entire experiences" while someone with normal memory changes that are age-related "only forgets part of an experience." My example is: it's normal to forget where you put your keys, but not knowing what the keys are for is a different situation all together.

Once you are concerned that a loved one might have Alzheimer's, you should go directly to a physician who specializes in diagnosing and treating the disease.

Tips for Keeping Your Loved One Engaged

If you've got a family member with an Alzheimer's or dementia diagnosis, there are many ways you can learn to cope. One suggestion: Focus on fun activities for you and your loved ones. There are a host of things you can do to keep them active and engaged:

  • Socialization and Outings. Get them out of the house, go places, do things, see people.
  • Discuss Current Events. Look at and discuss newspaper or magazine stories, preferably with color pictures.
  • Cook Together. This will probably take longer than you could do it yourself, but you'll have precious time with your loved one. Remember, safety first.
  • Exercise Daily. This can help stave off the progression of Alzheimer's, and keep your loved one fit. It's good for you, too.
  • Play Brain Games. Whether it's Sudoku or memory games, these mental challenges help key parts of the brain active.
  • Share Memories With Old Photos. These can be fun trips down memory lane, and a good opportunity to document family history.
  • Listen to Music. Music has an extraordinary ability to conjure up emotions and memories.

All of these efforts will keep your loved one active and reinforce a sense of independence and dignity while interacting with family and friends.

Make Life Easier for Someone With Alzheimer's

These tips make life easier for both your loved one and yourself. Caregivers need to do all they can to make daily routines easy, or you'll end up with caregiver burnout, just when you're very much needed

  • Keep an Emergency Contact List. Post the list—remember to use BIG PRINT—in a prominent place in the house. Share the list with family, friends, and neighbors.
  • Picture Phone. A picture phone can make it easier for the Alzheimer's patient to stay in touch with loved ones.
  • Organize and Label. Buy a label-maker, and label drawers, closets, and cabinets—for instance, SOCKS. This can help avoid confusion around dressing for some Alzheimer's patients.
  • Simplify and De-clutter. Get rid of unnecessary clutter, and limit choices. Dad only needs to choose between two pair of shirts every day, not 15.
  • Set a Regular Routine. Routine is key, whether it is the routine for the whole day, or for one task. If Dad needs help putting on his socks and shoes, do it the same way every day. Left sock first, left shoe second, right sock third, right shoe fourth. This will provide predictability and make getting dressed easier.
  • Use Visual Cues. Another way to help someone with Alzheimer's deal with the confusion is to identify places through pictures or other visual cues. Put a picture of the bathroom on the bathroom door, that way they'll know what's behind the door.

AARP has recently produced two videos for helping family caregivers. I encourage you to watch "When Memory Loss Hits Home," which shows how one family made low- to no-cost fixes to their home, as well as changes to their routine, to better assist their loved one, who living with Alzheimer's.

Alzheimer's Resources

Again, to quote Maria Shriver on her father's condition, "I don't mind having to reintroduce myself—at least I still have my dad." It is that disconnect between the person that you knew and the person that he is now that can be so hard emotionally on family members and friends.

But the difficulties can be financial as well.  The Alzheimer’s Association Web site has an array of resources, including information on "tax breaks for caregivers" and a "carefinder" for finding qualified people to assist with your loved one's care. Your local aging office can refer you to a geriatric care manager who will assess your situation and give suggestions for care. These professionals are specially trained to deal with the unique aspects of aging, including Alzheimer's, and can provide practical tips.

There are treatment possibilities for Alzheimer's that scientists are exploring, but the current state of the science is to try to slow down the progression of the disease so people are able to function as an active part of the family for as long as possible.

Please remember, this disease is progressive and caregivers need help in providing care to their loved ones. Please don't try to do this alone—use a circle of care that includes family, friends, and professionals:

  • You might need help with in-home care.
  • You might need to find a good care facility for your loved one.
  • You definitely need to take care of yourself too!

Through it all, I hope you can find some moments of enjoyment with your loved one. As Maria says, "she's just glad to have her dad" still with her.

Take care,


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