Caring Currents

You notice certain lapses in memory or behavior. You worry. You suggest a check-up. You get stonewalled. Sound familiar?

A fascinating new report from the Alzheimer's Association, based on interviews with more than 300 people who have early-stage Alzheimer's, sheds some light on why: A rampant negative stigma about the disease, much of it rooted in myths and misperceptions, especially regarding what the early stage is like.

But what if you do get your parent or family member to have that checkup? How likely is he or she to get an accurate diagnosis? The past decade has finally shed a great deal of light on early-stage Alzheimer's, and the must-read "Voices of Alzheimer's" report brings up many issues deserving deeper attention. But the problem of getting a diagnosis hasn't been widely discussed before.

To be sure, fairly accurate screenings are available...  Read more

Baroness Margaret Thatcher has had dementia for at least seven years, her daughter just disclosed for the first time in her new book, A Swim on Part in the Goldfish Bowl: A Memoir. Wonderful title, terrible news. Carol Thatcher doesn't specify the cause of the dementia, although her mother, now 82, was advised to quit public speaking several years ago after a series of small strokes, so perhaps it's vascular dementia.

Here's the part of the excerpt that resonated with me: "I had to learn to be patient. I also had to learn she had an illness and that it wasn’t personal."

The "it" she's referring to is the continual memory loss. It's so profound that the former British prime minister even forgets that her husband of 50 years has died. This happened with my own father in the months after my mother's death, and it was incredibly painful to watch his fresh grief when we'd have to tell him...  Read more

Nighttime can be nightmarish for those who live with someone in the moderate-to-advanced stages of dementia. The sleep patterns of caregivers over age 60 who provide direct, live-in care for people with dementia are significantly worse than those of noncaregivers, says a study in the new Journal of Clinical Sleep Medicine. These caregivers:

• Get less total sleep (an average of 6.5 hours per night)
• Take longer to fall asleep

If you already know basic good-sleep habits and are taking steps to minimize sundown syndrome and wandering (common sleep disruptors), what else can you do to solve the sleep puzzle? Here are two fresh ideas to consider:

1. Night respite care

I recently wrote about vacation respite care. Watch for night care to become the newest variation in the fast-growing respite care field. An innovator: the ElderServ at Night drop-in care program run by Hebrew Home in Riverdale, New York...  Read more

Respite vacations for Alzheimer's caregivers made the front page of the New York Times on Tuesday. Every caregiver should know the key points:

1. Respite can save your health and your marriage.
2. Overnight options include in-home care and short-stay arrangements in nursing homes, assisted-living facilities, and "camps," such as one run by the Family Caregiver Alliance.
3. Using vacation respite isn't bad for the loved one with dementia.
4. Taking a vacation isn't a sign that you're a lousy caregiver.

That last point probably belongs first, and in all caps. There's such a pervasive misconception, deep in the psyche, that it isn't "right" to leave a loved one who needs care while you go off on holiday. "Most caregivers do not take respite vacations because they see them as an admission of failure or they worry something will happen while they are away," says the Times piece.

It...  Read more

I cried when the news came that my beloved grandmother had died. But I also felt a lift of relief! Her slow, six- or seven-year Alzheimer's freefall had ended. Grieving for her was different from mourning my mother, who had died after a mere four weeks after a cancer diagnosis. The difference: Gram's Alzheimer's had already taken me farther down the road of grief.

We aren't just taking care of the people we love with dementia; we're simultaneously grieving for them. Social workers call this paradox anticipatory grief. I wish there were a zingier name -- one more easy to relate to. It's also been called "the long goodbye," "living death," and "experiencing lots of little deaths."

That's why I wasn't surprised by this week's news that more than 25 percent of dementia caregivers suffer from depression. If anything, you'd expect higher numbers. Most telling is the nature of their symptoms (compared to others' depression): More sadness, lack of hopefulness, and more guilt...  Read more

"Okay, dolly! Drink up all that water!" I used to cringe when my grandmother's aide would talk down to her like that. (No, Gram's name wasn't Dolly.) So at first, the news that people with Alzheimer's dislike being patronized seemed to fall into the "duh!" category. Then I realized it's a big wake-up call in two ways:

1. It reminds us that those with Alzheimer's deserve as much respect as anyone else.
2. It reminds us that conversations go two ways, even among those with impaired speech or no speech.

In a nutshell: When University of Kansas School of Nursing researchers analyzed videotapes of aides caring for people with Alzheimer's, they found that certain communication patterns by aides led to spikes in resistance and agitation.

What not to use, according to the researchers: Inappropriate terms of endearment (good girl, dear), a caring but controlling tone, and the royal "...  Read more

If you've noticed the word Alzheimer's all over the recent news, it's not just because your radar is naturally more attuned as a caregiver. The 2008 International Conference on Alzheimer's Disease has been taking place in Chicago all week.

What's worth knowing? Here's a handy summary of some of the biggest findings presented.

What Might Be a Risk Factor for Alzheimer's

• Thyroid hormones, in women: Very high or very low levels of thyrotropin seem to double the odds of Alzheimer's. WHAT IT MEANS: Those with a history of thyroid problems should get them controlled.
• Metabolic syndrome: High blood pressure/highcholesterol/high blood sugar/belly fat equals a 35 percent greater risk. WHAT IT MEANS: Well, it's another big warning about "shaping up".
• Your family history: If Mom had late-onset Alzheimer's, you may have inherited a deficiency in how your brain processes glucose. WHAT IT MEANS: We already knew there's a family link, but if it's your mom rather than your dad who has the disease, it's a louder warning sign to stay fit and mentally engaged...  Read more

Worried about a loved one's (or your own) memory slips -- but not that worried, considering he can still manage to drive, make everyday decisions, and carry on a normal conversation?

Maybe you should worry after all. Or at least keep a really watchful eye.

Mild cognitive impairment (MCI) is a relatively recently-identified category of cognitive trouble that falls between normal memory loss and Alzheimer's disease. Mayo Clinic scientists have just issued the first estimate of its prevalence -- nearly one million new cases a year in people over 70, more than double previous predictions. They had expected an increase of MCI cases of maybe 1 to 2 percent a year. Instead MCI is growing by 5 percent, and by 7 percent a year in people over 80.

That's on top of the 5 million people who already have Alzheimer's. And It's troubling because people with MCI are much more likely to develop Alzheimer's over time...  Read more

Three reasons to watch this Sunday, August 3 (9 p.m. ET), when most PBS stations air a rebroadcast of the Emmy-award-winning 2004 program, "The Forgetting: A Portrait of Alzheimer's":

1. The program includes a new discussion on "The Future of Alzheimer's," moderated by activist-actor David Hyde Pierce, whose father and grandfather had the disease.
2. It's a chance to share support with others. The Alzheimer's Association has been encouraging caregivers to host Viewing Parties around the TV event, for which it's providing viewer's guides, activities, and other tips. If you haven't already been invited to a viewing, why not host one for a few friends and relatives?
3. You can get a flavor of what it's like to have the disease. PBS has just this week updated some Alzheimer's resources on "The Forgetting" section of its website. The most interesting page features famous first...  Read more

People with dementia remember more than it may appear, says a small but interesting new study from the UK's University of Dundee. All knowledge isn't lost forever, as it may appear when the person is asked something and blanks on a correct response. That knowledge may be retrieved if the person is asked questions in the right way. The researchers found that when subjects were asked the meaning of words, they often couldn't say. But when the same information was asked in different ways, with more context, they often did remember.

Some related tips on how to talk to someone with dementia to boost their understanding:

• Be as clear and specific as possible.

Instead of: "Do you remember Mary?"

Try: "Here's Mary, your cousin. She used to live next-door to you in Chicago."

Instead of: "What do you want for lunch?"

Try: "Do you want to eat a turkey sandwich?"

• Use short sentences...  Read more

This week's passing of "Golden Girls" actress Estelle Getty, who died of Lewy Body Dementia (LBD), shone a golden light on a very common type of dementia that's often overshadowed by Alzheimer's.

Lewy Body Dementia: Also called (bear with me, it's a long list!) Lewy body disease, dementia with Lewy bodies, diffuse Lewy Body disease, cortical Lewy body disease, Alzheimer's plus Parkinson's, Parkinson's Disease Dementia, and Parkinsonian dementia, LBD accounts for up to 20 percent of all dementias. But only one-third to one-half of all cases are accurately diagnosed, according to to the Lewy Body Association.

How LBD is like Alzheimer's: Progressive memory loss, decreased judgment, disorientation to time and place, trouble with language.

How LBD is like Parkinson's: Features muscle stiffness, tremors, repeated falls, restless leg syndrome.

How it's unique: Add in hallucinations and delusions, including sleep disturbances due to nightmares...  Read more

Preserving family memories while you can -- before a parent or grandparent with dementia is too forgetful -- is one of my favorite caregiver reminders. The oldest memories are typically held longest, so even in the early-to-moderate stages of Alzheimer's, your parent might be able to pass enjoyable (and productive!) hours helping you identify faces in old photos or put together a family tree -- before it's too late.

But there's another kind of memory that deserve preservation: Those of your caregiving journey. What made me think about chronicling our parents' last chapter was this lovely story by Marsha Canright in the Galveston Daily News, about caring for her father-in-law. (Flagged from across the world by the Alzheimer's Australia blog!) I know what you might be thinking -- and I have some ideas:

"Whoa! Who wants to preserve this hard, sad time?"

There are benefits:

• You're honoring your parent -- and this phase of your life together...  Read more

Exercise has been called the "Fountain of Youth" for its countless health-preserving benefits, including safeguarding against mental declines. But what about an elder parent who already has dementia?

Keep her sipping -- or better, swimming in -- that fountain! Daily exercise improved mental ability by 30 percent over a one-year period in older people with dementia, says a new small Korean study in the International Journal of Sports Medicine. The women (average age 80) also improved their ability to feed, dress, and bathe themselves . The control group of those with dementia that didn't exercise showed no gains.

True, helping a loved one exercise is one more "thing to do." But it can be a fun thing. Here are some nudges to help get started.

"But she's never exercised before!"

Think like a tortoise -- start slow, go slow. It's the "go" that's the operative word...  Read more

Summer's half over, even for dementia caregivers. Will you take a vacation?

Dementia care partners tend to be especially housebound. Unfortunately going without a break is a good option only for martyrs or people looking to get sick.

Earlier this year, the journal The Gerontologist described an innovative, stress-cutting idea called "assisted vacations" -- special group trips designed for care partners and their loved one with dementia to take together. Sounds like a dream? Too bad it was only a pilot program. Meanwhile, no more excuses:

"I can't take her anywhere overnight"

People with dementia tend to not do well in new environments.

• Try visiting a familiar place from your parent's past rather than a new location.
• Trust your instincts; your parent may be unable to travel -- but don't let that stop you.

"I don't have backup care."

This dilemma is proof that you can't go it alone...  Read more

Worried that your parent gambles too much? Or maybe you've noticed she buys loads of things she doesn't need from TV shopping channels? If she also has Parkinson's disease, the culprit may be her medication.

A new study, from the University of Pennsylvania, isn't the first to make the link, but it's the largest to date, involving more than 3,000 people. It finds that dopamine agents used to treat Parkinson's symptoms place people at higher risk for impulse-control disorders. The risk is two to three times higher for such disorders as:

• Problem or pathological gambling
• Compulsive buying
• Compulsive sexual behavior
• Binge eating

It seems that dopamine helps motor control but also affects the part of the brain involved with reward systems. The effect held true both for levodopa and for dopamine agonists (pramipexole, ropinirole, pergolide). Thirteen percent of Parkinson's patients on these meds had at least one impulse disorder -- and more than a third of that number experienced multiple disorders...  Read more

A little perspective is in order after the latest Alzheimer's news. To be sure, it's a major breakthrough in Alzheimer's research: Scientists have isolated one of the keys to the cause of this awful disease. There are at least three different kinds of beta amyloid, the sticky protein that's known to be a telltale sign of the disease, but only one kind (when injected in rats) caused symptoms of memory loss. It has long puzzled researchers that some autopsied brains are clogged full of beta-amyloid, although the people never showed any sign of the disease.

This two-molecule form of beta-amyloid seemed to impair the synapses -- the communication connections -- within the brain. This discovery may speed the progress of drug-treatment development. It will surely clarify the path of future research.

But the big BUT is summed up by the neuroscience director at the National Institute on Aging (which...  Read more

Should the family member who's handling the lionshare of caregiving for a parent with Alzheimer's be paid for his or her (usually her) services? That "increasingly popular option" came up in a Wall Street Journal column on blunting the costs.

The problem:

Alzheimer's care carries the twin burden of usually being available both 24/7 and long-term. We hear so many stories at Caring.com of members who give up their jobs or downshift to part-time in order to look after parents. They save on the cost of professional care. But they lose income, retirement savings, Social Security -- and, potentially, medical insurance.

The pitfalls:

Federal bills that would compensate family caregivers have tended to die in committee. Should taxpayers pay for this growing need? Families may not have funds to pay one of their members, especially in this economy. And If funds come from family, there may be sibling disagreements over how much -- or whether -- to pay...  Read more

When you're expecting a baby, you suddenly notice pregnant women everywhere. If you're caring for a relative with Alzheimer's disease, it can seem like another case of being suddenly more attuned to the condition. Except it's not just perception. The number of people with the disease is growing -- now up to 5.2 million Americans. And so are Alzheimer's deaths.

Here are the leading causes of death as of 2006, the latest count, just released from the National Center for Health Statistics:

1. Heart disease
2. Cancer
3. Stroke
4. Chronic lower respiratory diseases
5. Accidents
6. ALZHEIMER'S DISEASE

Number 6 used to be diabetes. But deaths from diabetes, stroke, pneumonia, influenza -- even cancer and suicide -- all showed declines from 2005 to 2006.

In another NHS headline: Life expectancy is up to a record 78.1 years (81 years if you're a white woman)...  Read more

Thrive on multi-tasking? In about one minute, you can: (a) simultaneously make a financial contribution to the Alzheimer's Association, (b) flag your support for the Alzheimer's cause on your website or blog, (c) and honor a specific parent, grandparent, or other loved one.

Did I mention it's easy and won't cost you a cent?

Caring.com has partnered with the Alzheimer's Association to launch the Caring-Alzheimer's Association ribbon campaign. Caring.com is donating $10 to the association for each purple ribbon posted on a site or blog, with a $10,000 total goal.

You can pick one of two messages for your ribbon and personalize it to honor a specific person. (Maybe Dad or Grandpa, for Father's Day this Sunday?) Visit the above link or the Alzheimer's Association's advocacy website, www.actionalz.com to get started.

In honor of Joan Wright

Diagnosis of Alzheimer's

Get a Web Ribbon

Nobody likes to think about their parents', um, sex lives. Once dementia enters the picture -- bringing so many other concerns to deal with -- you might think sex, at least, is a moot issue. Not so fast, suggests an illuminating article in Slate. "Dorothy," 82, and "Bob," 95, were residents of a long-term care facility who fell in love and became sexually active. Both have dementia.

On their side: Relatives and staff who saw the pair as happy, healthy, and (critical to old age) socially reinvigorated --  and who perhaps wondered about their own rights to sexual pleasure and autonomy in their later years.

On the other side: Those who were horrified by the affair and variously worried about heart attack, socially and morally inappropriate behavior, and gold-digging.

In the grey middle: Concerns about informed consent, given the dementia, and about the role of the nursing home to balance the needs of sociability, safety, and privacy...  Read more

My dad's had a rough year. His wife of 57 years died unexpectedly of cancer, and he moved from his home of more than 40 years in Michigan to my brother's home not far from me in North Carolina. He has dementia. He also has a renal mass, found last spring, that couldn't be biopsied.

But he complains of no pain and joined a new bowling league in N.C., the Swinging Seniors. He helps my brother and his wife move mulch and fold laundry. He plays Wii with their six kids.

He's like a lot of dads: failing, but resilient. He always was like a lot of dads of his era: A lifetime employee who left in the tract-house morning with tie and briefcase and came home in time for meat and potatoes. Let Mom play the heavy. Watched a lot of sports.

On Father's Day, I used to make him a paper crown and give him Old Spice, a tie, and chocolate covered cherries. Father's Day seemed like a bonus birthday.

It's only as an adult that I've come to think of the day not just as a way to celebrate a parent, but to reflect on him in relation to the person I've become...  Read more

Caregiving can be an isolating experience. But here's some news that might motivate you to keep circulating. There's yet another new study out showing that an active social life helps stave off memory loss. This one, from the Harvard School of Public Health, looked at a large group of age 50-plussers. Turns out that people in their 50s and 60s who had active social lives showed the slowest rates of memory decline.

Doesn't seem to matter whether you get together with family, friends, a support group, colleagues, or others. Any source of social engagement seems to work, so long as it's an ongoing source of social support and involvement.

Other news this week inspires two suggestions for that social time:

DO bring a bottle of red wine. It contains reverstrol, which University of Wisconsin-Madison researchers say retards aging in much lower doses than previously thought.

DON'T bring pot...  Read more

More than 6 in 10 people with Alzheimer's wander (leave home of their own free will but become too lost or confused to return) at some point. Wandering sure seems like an oddly bucolic verb -- conjuring up meandering paths and merry wanderers -- to describe what can be a vexing and frightening experience for those left searching.

Every week sad stories fill newspapers. Some very recent ones: A Pennsylvania man headed to bed and wound up on a neighbor's front porch in the freezing cold. In Tampa, a woman wandered out to a neighbor's car, got in, and died of heatstroke. A Virginian drove away from a Fraternal Order of Police meeting and never made it home, while a Floridian drove off until he ran out of gas. (People wander behind the wheel, too.)

Most of those who roam have no idea they're lost or missing. They don't ask for help. Few can find their own way home.

Some recent innovations can...  Read more

Would you encourage a loved one to try an exciting new drug that promises to halt or treat the symptoms of Alzheimer's disease? What if the drug were only in the testing phase?

Patient participation in research for Alzheimer's disease is low -- too low to move the testing phase of the many candidate drugs in the pipeline as quickly as many researchers wish. Last week the Alzheimer's Research Forum presented a great examination of why this is, and anyone who's ever wondered about clinical trials or dreams of new treatment drugs should read it.

Among the reasons too few participate:

• Questions about informed consent among the mentally impaired.
• It can be a burden for caregiver and participant.
• Nobody wants to be the one getting the placebo (the dummy, so to speak, for the control group, against which the takers of the actual drug is compared).
• People just don't know how to enroll in trials -- and...  Read more

POP QUIZ:

1. Can prompt treatment of Alzheimer's prevent symptoms from worsening?
2. What's the life expectancy of someone with Alzheimer's?
3. Do quick mental status tests confirm a diagnosis of Alzheimer's?
4. Is talking about wandering with a loved one who does it an effective deterrent?

Misconceptions about these aspects of Alzheimer's disease are widespread among the public, caregivers, and patients themselves, according to Australian psychologist Karen Sullivan of Queensland University of Technology, who studies community awareness. Her research appears in an upcoming issue of the International Journal of Geriatric Psychiatry. Zeroing in on what people don't know, she says, helps frame the most useful education programs.

I asked her what the most surprising find was for her, and it turns out it's good news: Asked about how to respond to declining self-care abilities, "Most people thought it...  Read more

In a way, it was a sign of the times  when the inspiration for the mother in the "Family Circus" cartoon died of Alzheimer's disease last Friday, at age 82.

1960: The cartoon debuted -- as did many of us who are caregivers today. Or we were the ages of Billy, Dolly, Jeffy, and PJ, the kids in the cartoon, who were based on the five children of Thelma Keane and her cartoonist husband Bil Keane.

In the 1960s and 1970s: As we grew up, we could relate to the kids' funny comments and the invisible rascal "Not Me" who apparently lived with them and caused all the trouble.

In the 1980s and 1990s: Then, as we began having kids of our own, we could appreciate the long enduring comic on a new level, as parents. (Accordingly, the strip upgraded from a station wagon to a minivan around 1985.)

2000s: And now, here we are worrying about our own parents and seeing them through conditions such as Alzheimer's, which felled the doppleganger for the ever-calm, black-helmet-haired cartoon Mommy...  Read more

For people with Alzheimer's and other dementias, there's more evidence of the benefit of day services in an online preview of an article to appear in the International Journal of Geriatric Psychiatry. Researchers compared 30 patients who used respite care with 30 people of the same age and cognitive ability who had only  home care.

The results will come as no surprise to anyone involved with adult day programs: Behavioral problems and depressive symptoms, as well as psychotropic drug prescriptions, were much lower in the people who attended day services. (There was no change in cognition or functioning, which wouldn't be expected.)

But the study underscores a possibly more critical benefit: Caregivers whose loved ones used the day services reported a significant decrease in their caregiving burden. That fact alone makes it a must-do.

Help yourself today:

Step 1: Let go of any lingering stigmas you have about adult "day care" (as it's also called)...  Read more

In a relatively rare change from the usual glum headlines about aging parents, several decidedly sunny findings have hit my desk.

1. Mom really is older and wiser.

Certain memory changes short of full-blown dementia are a normal part of aging -- not because the brain is falling apart, but because it's functioning in different, and in some regards, better ways. A New York Times report this week tells how getting older brings a broader attention span that lets you take in more of a situation -- and then process it using a larger store of experiences.

Moral: Presented with all the information, Mom might have as much fresh thinking and ability to make a wise choice as you do. Don't shield her from all the facts, whether financial or medical. Keep her in the loop. Keep listening to her.

2. Dad is one calm cookie.

Starting around age 60, people report more feelings of ease, calm, and contentment than...  Read more

The word "dementia" is worse than passé—it's pejorative. It's like mongoloid. Or cripple. Moron. Midget. It's a term to be retired, argues John Trojanowski, co-director of the University of Pennsylvania's Center for Neurodegenerative Disease Research, in an essay in the new Archives of Neurology.

Hearing the label "dementia" makes average people think of madness, he argues. For the person afflicted, it creates a sudden "epiphany" of having arrived at a "dead end diagnosis," which changes (for the worse) the way you think about yourself and the way you live your life.

Trojonowski prefers the technical description (e.g. Pick's disease, or frontotemporal lobar degeneration) or the more descriptive "cognitive impairment" or "neurocognitive impairment" if the exact cause is uncertain.

Wall Street Journal Health Blog blogger Scott Hensley followed up with the essay's co-author Don Trachtenberg, who says most professionals have responded supportively...  Read more

Somebody's getting smart here: The train-your-brain industry is expected to grow from $100 million in 2005 to $2 billion by 2015! Consumers hoping to stave off memory loss  (read: aging baby boomers, you, me) are the biggest buyers.

Unfortunately evidence is scarce on these products' ability to prevent or reverse Alzheimer's or dementia. They've been shown to improve some mental skills, though, so for caregivers or people with mild cognitive impairment or early dementia who want to give them a whirl, here's a starter list.

Software products:  

• (m)Power Cognitive Fitness System (from Dakim, created for older adults in institutions; home version out later this year--and exercise pioneer Jack LaLanne, 93, just signed on as its "brain fitness motivational coach") 
• Brain Fitness Classic and InSight (both from Posit Science)   
• MindFit (from CogniFit, founded...  Read more

Looks like Jack Sprat (the guy who ate no fat) is at risk of developing Alzheimer's right along with his wife who could eat no lean. You've already heard that obese people are at greater risk for developing dementias. A major new Johns Hopkins Bloomberg School of Public Health analysis of two decades worth of long-term international studies confirms this -- in fact, obesity results in as much as an 80 percent higher risk of developing Alzheimer's in women, a 73 percent raised risk for vascular dementia in men, and a 41 percent higher risk for both sexes of developing dementia generally.

Surprisingly, the researchers found that people who are underweight also increase their general dementia risk, by more than a third! The exact causal relationship between size and dementia isn't clear in either the obese or the scrawny.

But -- hooray for some good news -- people who are only somewhat overweight don't appear to have an elevated risk of dementia or Alzheimer's...  Read more

Adequate sleep…good nutrition…social stimulation...a little fresh air and exercise…Should proper care of a loved one with Alzheimer's or other dementias involve a mental workout, too?

It's a question on many caregivers' minds as they hear about the explosive growth of  the $225 million computer-based brain-fitness industry. And the answer may depend on what you mean by "workout."  More than 400 residential facilities for older adults have launched computer "brain fitness centers," says SharpBrains, which tracks the industry. (The New York Times recently wrote about boomers' panicky self-interest in the products.) More than 20 companies now offer brain-boosting games and, yup, many of their product names play on gym imagery -- implying that if you work hard enough on those muscles, you'll see impressive results.

And it's true that the brain can be strengthened through use, like your muscles...  Read more

Is the first Mother's Day without your mother the hardest? Each gift or florist catalog in my mailbox makes me flinch. I walk faster past the card aisle at the drugstore. My mom died in December of a metastasized cancer she only knew about for 21 days, which were divided evenly between hospital and home hospice. She was 81.

What I wish I'd given her while she was still with us, during those last three weeks, was a certain kind of conversation. Not the I-love-you or we’ll-take-care-of-Dad (who has dementia) conversations. I had those. I wish I'd given her more openings to talk about her side of things. Too late, I've thought of so many questions that I avoided while we are all so busy trying to seem calm and normal about the whole abnormal, sucky thing:

• "How do you feel -- no, really?"

• "What do you think about what the doctor said?"

• "Are you scared?"

• "Are you mad...  Read more

Stumped for ideas beyond flowers and chocolates for Mother's Day (Sunday, May 11th)?

If your mother, grandmother, or godmother has dementia or Alzheimer's, look no further than this thoughtful list from Alzheimer's Daily News. That blog is part of the Ageless Design company, which also runs The Alzheimer's Store, one of the most comprehensive resources out there on products for people with Alzheimer's or dementia and their caregivers. It was founded by gerontologist-architect Mark Warner, who personally evaluates everything sold: wandering alarms, memory stimulation tools, aids for daily living, and more -- including, of course, gifts.

Some basic giving guidelines:

• Consider what brings pleasure now (music, TV classics) and what areas are giving her trouble (for example, if pushing the TV remote buttons is hard, switch to a simpler model).

• Select items that are failure proof and can instill a feeling of success (like a phone where you press the picture of the person you want to talk to, no numbers to recall)...  Read more

Would it help your peace of mind if your forgetful parent had a stove that prevented pots from boiling over? Or a faucet that automatically shuts off when the sink or tub are full? In the world of home appliances and fixtures, the future is now.

Today's Wall Street Journal offers a roundup of handy new products that address the memory slips, vision problems, and motor-skill issues common to aging. A motion-sensor lighting-control system that illuminates the way to the bathroom when you get out of bed! Dishwasher drawers that can be emptied without bending over. A microwave whose controls have a large, easy-to-read font! Many innovations were shown at the recent annual National Kitchen and Bath Industry Show and are available now, or being introduced soon.

These ideas -- along with some we’ve mentioned before -- can help our aging parents stay in their homes longer. And they might do the same for the rest of us someday...  Read more

From theSmall Acts Bring Big Dividends Department: Here's a way to bring pleasure and peacefulness to a loved one with dementia or Alzheimer's that may also improve communications and add meaning to life: Tap into their memories.

Seem counterintuitive for dealing with someone who has memory loss?  A technique used in clinical settings does just this. And it's been popping up in news reports—reminding us of its limitless applications for caregivers and their loved ones anywhere. Reminiscence therapy (RT) involves stimulating talk about the past through the use of sensory prompts  (images, sounds, textures, tastes).  Research is unclear whether it prolongs memory or improves cognition. But RT does seem to improve mood and quality of life,  especially in early or mid stages of the disease, which is huge. In fact, it's also used to treat depression -- which affects as many as 40 to 50 percent of people with Alzheimer's...  Read more

It's natural to see parents, grandparents, and other aging loved ones as enduring a season of loss: social losses as their friends move away or pass away; the loss of physical strength; the loss of independence when they can no longer drive or live alone. Now factor in this surprise: They may be a lot happier than you think.

They may even be happier than you!

There are some sterotype-blowing findings in April's American Sociological Review, from a University of Chicago sociologist who periodically interviewed a sampling of 28,000 people (ages 18 to 88) over more than 30 years:

• The odds of being happy increase 5 percent with every 10 years of age

• More 88-year-olds report being "very happy" than do 18-year-olds (which calls to mind that line from Capra's 'It's a Wonderful Life," "Youth is wasted on the wrong people!")

• The least happy people of all? Baby boomers.

What gives...  Read more

This week Mayo Clinic researchers reported that men are 1.5 times more likely than women to have memory problems. You may wonder, then, how it can also be true (which it is) that more women develop and die from Alzheimer's?

The kind of memory loss in the new study is called mild cognitive impairment (MCI). Scientists theorize that in men, there's a delayed progression from MCI to dementias like Alzheimer's. Or possibly dementia in women progresses faster. Nobody's sure.

What is certain is that memory disorders are plentiful enough to be hard to keep straight. Seems like a good time for a recap:

• Normal memory loss: Everybody's brain ages. As the connections and chemicals in the brain alter with time, many people forget things like names, keys, and what the heck they went in the next room to get. Normal.

• Mild cognitive impairment: Problems with memory, language, or other mental functions are noticeable to others (and show up on tests) but don't interfere with daily life...  Read more

You may know about art therapy for people with Alzheimer's and other dementias. But caregivers can benefit by using the arts, too -- as a break. It's an often-overlooked, quick pick-me-up, handy if a vacation is only a daydream and you're not into meditative breathing.

Gay Hanna, executive director for the National Center for Creative Aging, which offers a resource directory on arts programs, says the benefits of art definitely work  to heal cared-for and caregiver alike. So....

WRITE

Keep a diary. Write a letter. Pour your heart out on looseleaf and burn it up after. Or join this online study by Dr. Howard Butcher at the University of Iowa, who's researching the effects of writing as stress relief for dementia caregivers specifically. Lots of studies have shown that writing has mental and physical health benefits for people in other stressful situations.

Or, of course, blog! Nikki of Dementia...  Read more

Hmmm, did I remember to make sure Dad took his pills?

What was I supposed to call Mom's doctor about—what's his name, anyway?

And where are my %#*@  keys?

Even as midlife caregivers worry and grieve over our parents' Alzheimer's and other dementias, there's another fret in the backs of our minds: our minds.

The '90s were dubbed "the decade of the brain" after new imaging tests opened a window to how the brain works. Geriatrician Robert Butler calls for a "Century of the Brain"  to research Alzheimer's in his new book The Longevity Revolution. But the sweeping label many boomers will connect with most is the "Bad Memory Century," as  pronounced by New York Times columnist David Brooks last week. He's not referring to our parents' memory issues, but our own:

Society is now riven between the memory haves and the memory have-nots. On the one side are these colossal Proustian memory bullies who get 1,800 pages of recollection out of a mere cookie-bite...  Read more

If it seems like a new dementia or Alzheimer's preventative measure is heralded every week, well, that's not true. It's more like two and three a week. Coffee. Wine. Fish oil. Avoiding diabetes. (That's this week's round-up.)All intriguing findings… but not very practically useful if your parent already has dementia.   In that case there's something you may need more than fish oil: Therapy. A new nine-year study by the University of Minnesota School of Nursing finds that individualized, long-term counseling reduces the burden on dementia caregivers and cuts their depressive symptoms (depression also fingered as a Alzheimer's risk factor).Providing care to someone with dementia is so hard that you really do need a hand. And an ear. Yet caregivers often reject outside support, say social workers...  Read more

Any of the following sound familiar?

• You often walk around with two purses on your shoulder, one of them mom's.
• You let your parent sit in the doctor's waiting room while you take her insurance card and credit card up to the counter for co-pays.
• You have your parents' garage door opener on the car visor next to your own.
• You compliment a fanciful new cane in words once reserved for good-looking handbags or silk scarves.
• You are the person in your family "who can."

If you're nodding your head in recognition, maybe you're a "designated daughter," the apt term, coined by D.G. Fulford in her just-released book of the same name, to describe the sibling--so often a daughter-- who becomes the companion and caregiver for a parent who needs her (often after the other parent's death).

Designated Daughter: The Bonus Years With Mom (Voice/Hyperion) makes clear that caregiving is a two-way street...  Read more

Who doesn't wish for a pill to make Alzheimer's go away? Unfortunately recent headlines underscore that, for now, caregivers need to focus their energy on learning how to prevent and manage symptoms through behavioral therapies.

A quick recap:

* "Medication worsens Alzheimer's." A UK study has found that antipsychotic drugs such as Melleril and Risperdal used to treat hallucinations, aggression, and agitation in dementia patients -- usually in nursing homes -- offer no benefit, especially over the long term, and worse, often cause a decline in speaking ability.

* "Only modest evidence of clinically meaningful benefit." That's how two major medical groups -- the American College of Physicians and the American College of Family Physicians -- summed up their joint study into the five dementia-specific drugs used to treat memory loss and cognition, such as Aricept and Namenda, last month...  Read more

HALF of all Americans carry a new high-risk factor for Alzheimer's/dementia: abdominal density, a.k.a. central obesity, a.k.a. belly fat. And if you have it in your 40s, you're two to three times more likely to develop dementia in your 70s, according to a longterm study of more than 6,500 people by Kaiser Permanente, published this week in Neurology.

That makes an apple-shaped body a greater risk factor than family history.

It's already been established that there's a strong connection between Alzheimer's and such obesity-related conditions as high blood pressure, high cholesterol, diabetes, and heart disease. (That alone is still new enough to surprise many laypeople.) But this is the first study to directly link excess weight --specifically, around the middle -- to later dementia.

Now some good news: Scientist-educator Lucie Arbuthnot, who tracks Alzheimer's prevention research, says all...  Read more

De-stigmatizing. Re-thinking. Re-naming. If there's a bright thread running through this week's big "Aging in America" conference presented by the National Council on Aging and the American Society on Aging, it's that program by program, provider by provider, the whole concept of eldercare is going through a tremendous shift in a hugely productive direction. Just in time for us and our parents.

You have to love, for example, the vision of an "age rich, elder-wealthy society" painted by William Thomas, an inspiring gerontologist at the University of Maryland Erickson School of Aging. "The 21st century requires more than compassion; it requires that we exercise our imaginations," he said. "We need to move beyond the stigmatizing of dependency and the lionization of independence."

In other words, let's focus on what IS -- all the shades of grey -- and mine good from it...  Read more

Anyone caring for a relative with Alzheimer's or dementia can't help but have noticed all these scary numbers in the news this past week:* 10 million baby boomers are forecast to get Alzheimer's -- that's 1 in 8.

* 1 in 5 women and 1 in 7 men will get some kind of dementia in their lifetime.

* Almost 1 in 4 people over age 70 suffer from memory loss that impairs daily life but isn't dementia.

* Having 2 parents with Alzheimer's raises your own risk of developing it. There's a silver lining in these grim forecasts: A wake up call to boomer caregivers (and pre-boomers and Gen-Xers who are caregiving, too) to take care of ourselves. Basic? Sure. Overlooked? Definitely. Difficult? One of the tougher challenges of our jam-sandwiched lives. (You have to laugh at the title of this KnowItAlz.com post: "Help Wanted: Caregiver for ME.") Alas, we are our brains' own caregivers...  Read more

Does Alzheimer's disease lack the "heroic glamour" of cancer? Fighting words from bestselling British fantasy author Terry Pratchett, who was diagnosed with early-onset Alzheimer's last year at 59. He's donating $1 million to find a cure, pointing out that Alzheimer's receives far less scientific attention on a research-dollar-per-victim basis—about $22 per UK Alzheimer's sufferer vs. $580 per UK cancer sufferer. He isn’t dissing individual cancer sufferers, which included his own dad. Instead he’s drawing attention to what he calls an “a nasty disease, surrounded by shadows and small, largely unseen tragedies.” What really lacks heroic glamour, of course, is caregiving of all kinds. Alzheimer's caregiving is a particular challenge because of its long-term, progressive nature. Already, for our parents, there aren't enough resources to go around...  Read more

For all the emphasis on the practical difficulties of caring for someone with Alzheimer’s or other dementias, an enlightening new study reports that daily care isn’t the worst of it: Grief is.That may not come as a surprise if you’re in the trenches. But it does shed light on an under-served aspect of care-giving--the emotional toll. University of Indianapolis researchers asked more than 400 caregivers the open-ended question: “What would you say is the biggest barrier you have faced as a caregiver?” More than 80 percent referred to the loss of the person they used to know.Alzheimer’s care-giving is especially painful because we experience two hard psychological states at once:1. “Anticipatory grief”: the pain of losing a loved one, felt in advance of the person’s death (a common phenomenon with the terminally ill).2. "Ambiguous loss”: interacting with someone who’s not fully present socially or psychologically...  Read more