Coping with Dementia: A Caregiver’s Guide

Coping With Dementia: A Caregiver’s Guide

BLOGGERS: MARY A. LANGUIRAND, PHD

ROBERT F. BORNSTEIN, PHD

Many people who have experienced a loved one’s dementia have said that given the choice, they’d rather deal with almost any other ailment, no matter how painful or debilitating.  Medical science has gotten pretty good at alleviating pain or restoring physical function—hearts can be made to beat properly, lost limbs can be accommodated with prosthetic devices, failed organs can be replaced via transplant.  However, there’s almost nothing we can do to fix the deterioration of memory, communication skills, and reasoning that dementia steals away.  Some recent experimental drugs hold promise, but at this point most of those medications are just that: experimental.  And few experiences are as frustrating as watching a once-vibrant, intelligent, witty person deteriorate into a confused stranger.

There are numerous forms of dementia, and great differences from person to person in how dementia symptoms are expressed.  However, all forms of dementia have certain common features.  These include:

• loss of memory and impairment in reasoning abilities
• changes in the ability to produce and/or understand verbal, written, and symbolic language
• deterioration in everyday practical skills

In the early stages of dementia, the person usually knows that ‘something is wrong’.  She may realize that she is having difficulty remembering names, balancing a checkbook, or figuring out how to use the microwave.  Some people acknowledge their problems openly and voice frustration, fear, or embarrassment about them.  While this response may provoke worry in you, it’s actually pretty adaptive: It’s an opportunity to discuss the problems openly, and work on ways to address them.

Things get trickier when your loved one goes to great lengths to hide or deny their difficulties.  They may offer plausible explanations and excuses.  “I read perfectly well—I just need new glasses!”  “The buttons on that remote are too small!”  “I know exactly where I left my bag!  It’s not there—somebody must have taken it!”

At first you will probably respond with problem-solving suggestions and helpful gestures, arranging eye appointments, buying new remotes, and so forth.  You’ll eventually find that most of these efforts don’t actually solve the problems (even if they help temporarily).  Worse, over time your efforts may be met with angry rejection, recriminations, or even abuse: Dementia is frightening to the person who has it (even if they deny it), and they’re likely to lash out at the nearest moving target.  That’s you.

You may both get pretty frustrated and angry with one another during this period, and the relationship may become quite fraught.  You feel that you are always encountering an angry, frightened, edgy person who is quick to attack you for their problems.  The care-receiver feels that they’re being patronized, marginalized, or discounted.

As the disease progresses, the capacity for realizing that there are problems fades, and the person with dementia becomes less aware of her behavior and its impact.  At this point, the patient is often blessed with ‘pleasant confusion,’ especially if their environment can anticipate and meet most of their needs successfully.  They may not be able to tell you who’s president, name their grandchildren, or recall how to cook a favorite meal, but as long as they can be physically comfortable, they tend to accept whatever is happening without question.  Some skills and pieces of information may be preserved pretty well—they may be able to knit with great skill, or recite baseball statistics from games they watched 30 years ago with total accuracy.  Often, they will construct a sort of “Reader’s Digest” version of their life experiences and beliefs, which will be presented as indisputable fact.  When the story is reasonably accurate and presents all the players in a favorable light, it can be a pretty good construct (so leave it alone).  Problems arise when significant distortions or hard-to-hear criticisms of yourself or those you love get incorporated into the narrative.  Hearing one parent criticize the other, or advise new acquaintances that your spouse is a real loser hurts, even if there’s some truth to the observation.  Worse, you (and everyone else) will hear it over and over.  The temptation to argue, correct, or defend may be very strong.  Sadly, facts and logic usually get you nowhere.

So, what do you do?  Some responses tend to work better than others.

First, remain calm. Answering the same question 20 times in one afternoon or hearing your loved one recite a totally skewed account of events for the hundredth time can make you want to scream.  Losing your cool helps nobody.  Your loved one did not develop dementia in order to annoy you, they’re not doing it on purpose, and they can’t help it.  So change the subject.  Suggest that you go out on the patio and look at the flowers.  Take a break.  If all else fails, leave—do something that will help you regain control.  Take a walk, grab a cup or tea, call a friend, pray.

Distraction sometimes works. Some realities will not change however much you discuss them, rendering the interaction upsetting and pointless.  “Re-direction” is the formal term for moving from a hot topic to something more neutral.  It’s harder to do than it sounds, especially with people with dementia, who can be surprisingly stubborn in their focus on a given topic.  However, persistence can sometimes pay off.  “Why can’t I go home with you tonight?”  can be countered with “They’re going to be showing your favorite movie in the dining room after dinner.  Remember how great Bogart was in Casablanca?”

Keep problem-solving efforts reasonable. When Mom complains that the telephone buttons are too small, buy her a phone with bigger numbers.  When she complains that there are ‘too many numbers to dial,’ program the speed dial function, and leave a note explaining how to use it.  However, when she complains that she can’t actually reach anybody on the phone in spite of all these efforts, what are you supposed to do?  That one’s a trap, so you may want to respond with a vague reply about ‘how busy people are these days,’ and change the topic.  You cannot ‘solve’ dementia—know when to quit.

Here’s a key one: Try to acknowledge feeling, rather than content.  “I want to go home” may actually mean “I miss the way things were,” “I’m frightened,” “I hate being sick,” or all of the above.  You know your loved one well, and can probably make a pretty good guess about the feelings associated with many of the things she says.  In this area the research findings are clear: Addressing the underlying feeling is more effective than arguing the logic.

That’s our best advice, but we’d like to hear from you as well.  What are your experiences in coping with a loved one’s dementia.  What has worked for you?

Robert Bornstein and Mary Languirand are the authors of When Someone You Love Needs Nursing Home, Assisted Living, or In Home Care, published by Newmarket Press (2009). Here’s the link: http://www.newmarketpress.com/title.asp?id=901

To find out more about Robert Bornstein, click his photo.

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NOW THAT I AM ALMOST 64

Now that I am almost 64, who will meet my needs when I am 84?

BLOGGER: DEBBIE HEISER

AUTHORS:

Deborah Heiser, Judith L. Howe, Robert Maiden, Beverly Horowitz, Pat Brownell

When you think of growing older, what comes to mind?  Fun, family, golf, workforce issues…?  Workforce issues?  Yes, workforce issues.  Believe it or not, we need to pay very close attention to them.  Each day 8,000 baby boomers turn 60.   In 2011, 78 million baby boomers will begin to turn 65. The Bureau of Labor Statistics (2005) estimates the demand for employment in aging will increase 26% over the next few years – particularly in health related jobs.  All the while, those 85 years and older are the fastest growing segment in the U.S. population.  This age group is expected to double in 2030 to 9.6 million and to double again by 2050.

Unfortunately, there is a down side to all of this longevity.  There is a HUGE need for a trained workforce to serve the aging.  According to Boxer and Collins (20007), 8 out of 10 older adults have at least one chronic illness and, of those, about 2/3 have multiple chronic conditions that require complex treatment and coordinated care.  Maiden, Chireac, and Maiden (2002) found that 50% of people requiring in-home care are 85 but older-family members find it difficult to secure, manage, maintain, and pay for adequate in-home assistance.  To met the demand, we need 36,000 certified geriatricians; we only have 7,128 in the U.S.  Despite the demand, and the increase in demand, the supply of in-home workers remains very low and is expected to remain low.  Even those who are available receive very little training and are then asked to perform functions they are not adequately trained for (Maiden & Maiden, 2004). Only 5% of social workers are trained in aging issues and only 3% of advance practice nurses specialize in aging.  “Besides being inadequately prepared in geriatrics, the current workforce is not large enough to meet older patents’ needs. and the scarcity of workers specializing in the care of older adults is even more pronounced” (Institute of Medicine, 2007, p. 5).

To determine what was going on in education, Dr. John Krout, a professor in New York State and a Past President of the State Society on Aging of New York, recommended taking a look at the New York State Institutions of Higher Learning.  Based on this recommendation, an inventory of all schools within the state was conducted.  The findings were astonishing!

Of 242 schools in higher learning:

Note  ***Only one school, now defunct, offered a PhD.

The State Society on Aging of New York (SSA) and The State Office on Aging of New York (NYSOFA) teamed up in 2007to create the Workforce Project charged with understanding training needs in the State of New York. The SSA and NYSOFA conducted a series of 8 Listening Sessions across the State.  The notes taken during each of the Listening Sessions were compiled and a content analysis was conducted to systematically identify key words and phrases used at each Session to determine important structures and themes.  The results are based on ratings provided by three independent coders who identified and tallied themes discussed at each of the Listening Sessions.

A total frequency and percent of discussion associated with each key topic was determined for each of the seven major discussion questions that framed the Listening Sessions.

The 7 Questions asked at each of the 8 Listening Sessions were:

Question 1:
Do you see a need for more education about aging staff in your organization?

Question 2:
On what topic would you like to see more education?

Question 3:
How should training / educational opportunities be presented?

Question 4:
What credentialing and certification should be considered?

Question 5:
Should gerontology be infused into college curricula?  Across disciplines?

Question 6:
What is the ability of organizations to support education/training for employees

Question 7:
Other comments

The Top 10 Key Findings were:

žThe findings from the Listening Sessions, as described in the Content Analysis show that a variety of issues were brought up.  Some were brought up only once, and some several times.

The organizations collaborated again at the SSA’s Annual Conference in 2008 to discuss the findings and “next steps” with 120 conference participants.  The participants completed questionnaires.  Notes were taken and were reviewed for key themes with regard to the four workforce training and education questions posed to the group. The results are broken down by question:

Question 1:
What do you think are good next steps we can take?

The overarching theme for this question was education. Forty seven percent (47%) of the responses and notes highlighted the need for education from k-12 and.  Additionally, they recommended educating college students earlier in their undergraduate education, and employing online education.  Other responses with suggested sensitivity training for gay/lesbian issues in training aides, elder abuse training, expanding nursing programs, fully funding GECs, emphasizing Geriatrics as a career, exposing teachers to SSA and Teach for America, and grassroots efforts.

Question 2:
Of the top 10 key issues identified, what do you see as the most important to focus on?

There were three distinct themes for this question.  Thirty nine percent (39%) of the responses advocated education, 39% training, and 22% financial aide and incentives.  With regard to education, the responses were: education for k-12 and all curriculum, college students receiving education earlier in their undergrad education, and online education.  Training responses were: aide training, caregiver training, and work-site training and mentoring.   Financial aide and incentives were not broken down further.

Question 3:
How can we – area agencies, academics, practitioners, and government – work together to move workforce education and training issues forward?

There were two distinct themes for this question with 42% of the responses advocating financial solutions (financial aide and incentives, support the Boxer Bill, and fully fund GECs) and 31% supporting increased education (education – k-12 and all curriculum, online education, and pilot curriculum programs for secondary education

Question 4:
Can you think of any other incentives for promoting education and training in aging?

Nearly 67% responded that there was a need for community service for high school students; approximately 33% responded that there is a need for increased payments and reimbursement for medical and social services.

Recommendations coming out of the Next Steps, SSA conference, mirrored the listening sessions.  They focused on education (k-12 in particular, and online training).  Responses for education were addressed in questions 1-3, and for two of the three questions, was a top response.

NowWhat?

We must now move toward addressing the issues brought up by New Yorkers as key workforce issues.

Let us know what you think!  Leave a comment below!

To read the full report published in 2008 by NYSOFA, please go to the State Office of Aging of New York Website: http://www.aging.ny.gov/ReportsAndData/WorkforceEducation/Introduction.cfm

To read this article on the SSA website, please go to: www.ssany.org

To become a member of the State Society on Aging of New York, please go to: www.ssany.org

To find out more about Dr. Heiser, click the photo below:

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CAREGIVER’S GUIDE TO MANAGING MULTIPLE ROLES

Stretching to Cover:  

The Caregiver’s Guide to Managing Multiple Roles

 BLOGGERS:  Mary A. Languirand, PhD and Robert F. Bornstein, PhD

The typical caregiver has many roles–daughter or son, spouse, parent, co-worker, sibling, friend…..the list goes on.  Some of these are supporting roles, with modest demands, but some are leading roles with multiple responsibilities.  The juxtaposition of large and small, crucial and trivial, short-term and long-term requires a lot of cognitive and emotional readjustment.  It sounds easy until you try to do it.  The sheer energy required to shift perspective from one role to another is one part of the stress.  Weighing competing views and opinions is another.  When everybody needs a piece of you, allotting your time and energy becomes a complex balancing act.

We’re always amazed at the flexibility shown by many caregivers.  There you are, talking on the cell phone with children, or directing clients or office staff on important matters as you tote drugstore bags with Mom’s favorite lipstick and hand lotion, her laundry neatly folded in a duffle on the other arm.  When you think about all the steps involved in those processes, and all the details you’re juggling, it’s amazing you can keep it all straight.  But what’s the impact–what’s the cost?

Great thinkers encourage us to ‘live in the moment,’ and savor life as it happens.  It’s a terrific idea, but when you have many roles the actual experience is very different–at any given moment, you must think about your next move, your next meeting, next week, next month, and next year.  Someone recently remarked that most days they begin work while still in the shower–funny, but true.  The shower, the drive to work, and the other moments of ‘down time’ can quickly be absorbed in thinking about our responsibilities.  We ruminate about work while driving, focus on the kids’ recital during a meeting, generate a grocery list at the recital.  The result is the feeling of always being ‘elsewhere’ or in the ‘wrong’ mode.  This is less of a problem while in the shower than it is when you’re behind the wheel (since research suggests that half of all car accidents are due to driver distraction), but it’s still a problem.

People are often surprised to see the data on multitasking.  Not only is the practice actually less efficient than doing one thing at a time, it also has emotional costs.  Not being fully present in what’s happening causes you to miss events going on around you–you’re there, but derive little benefit.  Further, those close to you really do notice–and sometimes resent–your ‘absent presence’.  Bosses, clients, spouses, and children are notoriously intolerant of anything less than your undivided attention.  However, their resentment–whether or not they express it directly–likely pales next to that of an ill or aging loved one.

When you’re ill your world tends to shrink.  Makes sense if you think about it: The personal relevance of many matters outside your immediate environment becomes increasingly remote.  From a psychological viewpoint, this is good energy conservation–you don’t waste precious time on things that aren’t affecting you.  It also captures one part of ‘being in the moment’ quite brilliantly.  However, it can be problematic when dealing with those still focused on more distant matters.

When you’ve had a horrible day at work, gotten bad news about the kids, and sloshed through evil traffic in two inches of sleet to deliver your loved one’s laundry (all the while listening to news about the tanking economy and mortgage meltdowns), you should get a little credit for your care giving efforts.  You might even want a little sympathy.  You’re more likely to get criticized for ‘not visiting enough’ before getting an earful about everything that went wrong while you were away….

So what can you do to cope?  Three things:

1.  Role pruning

Those who have pondered deep philosophical matters all come around to the same conclusions: Life is precious, time is fleeting, and there aren’t any do-overs.  You can’t ever get lost time back, so give some thought to what you’re doing and why.  Review each of your commitments, and take a hard look at what you give and get in each.  You can’t just ditch some roles when they’re no longer fun.  If this were possible, few teenagers would still have their parents’ address or phone number.  However, you can re-evaluate the roles you’ve taken on, and change those that aren’t fulfilling.  Some burdens are eased by reminding yourself that they’re temporary.  You can also delegate responsibilities.  In spite of how it may sometimes feel, you are not the only person in the world able to do some tasks.  Share the burden–ask for help.

2.   Set some limits

Figure out how much time you want to allocate to each role, and stick to those guidelines.  True, some flexibility is in order here: Emergent situations do arise, and require appropriate action.  However, if some parts of your life seem to generate constant chaos and absorb most of your energies, it might be time to put on the brakes.  Leave losing battles, and give more of yourself to those things that re-energize you.  This is based on sound psychological principles: Reinforce desirable behavior, and withdraw reinforcement from bad behavior.  So if your loved one is truly being impossible, it’s OK to visit briefly and call it a day–you’ll stay longer when she’s in a better mood.  You can advise her of what you’re doing and why if you want to, but it really isn’t necessary.  The beauty of reinforcement principles is that they impact behavior naturally, regardless of whether the person is aware of it.

3.   Take care of yourself

We’re bombarded by the same messages over and over for a reason:  they’re important, they’re usually true, and most of the time they work.  So here’s a good message: You must reserve time for yourself if you’re going to function optimally.  Maintaining your own health is crucial; if you get sick, nobody wins.  Exercise, time spent with friends, adequate sleep, proper diet, and a few little indulgences and self-rewards are essential if you want to keep going.  Being a good caregiver means taking care of yourself as well.  You’re not being selfish–it’s just common sense. 

Robert Bornstein and Mary Languirand are the authors of When Someone You Love Needs Nursing Home, Assisted Living, or In Home Care, published by Newmarket Press.  The second edition, revised and updated, was just released.  Here’s the link: http://www.newmarketpress.com/title.asp?id=901

To find out more about Robert Bornstein, click his photo to read his bio and click the links to read his other blogs.

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Tips for Caregivers: Knowing When Your Loved One Needs Extra Help and Care

Tips for Caregivers: Knowing When your Loved One Needs Extra Help

BLOGGERS: ROBERT F. BORNSTEIN 

                        MARY A. LANGUIRAND 

Several years ago we wrote a book on nursing home care.  Since the book came out we’ve given talks on various eldercare-related issues, and part of what we do is try to dispel myths about assisted living facilities and nursing homes–myths that prevent people from planning effectively for the future.  One statement we’ve made at a number of talks seems to surprise people and stick in their minds: 

No one has ever entered a nursing home because they have Alzheimer’s disease, or because they broke a hip or had a stroke.  No one.  Never happened, never will.

There’s only one reason anyone ever enters a nursing home: They can no longer carry out activities of daily living.

Activities of daily living–or ADLs–are those well-practiced everyday tasks we do automatically, reflexively, almost without thinking.  Getting dressed, for example, or bathing on our own.  These tasks seem simple, and for most of us they are.  But illness or injury sometimes impairs our ability to carry out ADLs.  Sometimes the problems are temporary, but in other cases they’re lasting.  And that’s when extra help and care–sometimes nursing home care–is needed.

Eldercare professionals divide ADLs into two categories: basic and complex.  Basic ADLs include things like using the bathroom without help, or dressing appropriately for the weather.  Complex ADLs include things like shopping, cooking, and managing one’s medication.  When a person loses the ability to carry out complex ADLs, most often they require assisted living or in-home care.  When a person loses the ability to carry out basic ADLs, nursing home care is almost always required.

How can you tell when someone is showing enough functional decline to require in-home or out-of-home care? Five warning signs to look for:

• Food problems  These usually take two forms: improper food storage or improper preparation.  If you arrive at your mother’s apartment and find milk stored in the kitchen cabinet, that’s a red flag, and cause for concern.  Ditto if she serves you near-raw (or grossly blackened) hamburger (especially if she’s usually a good cook).

• A decline in cleanliness  Again, two forms–surroundings or self.  Sometimes you’ll notice a decline in cleanliness of the home (for example, dustballs in the bedroom or a filthy bathroom floor).  In other cases the problem may lie in the person’s hygiene–clothes unwashed (and more than a bit whiffy), or makeup sloppily applied.

• Unpaid bills or unopened correspondence  People who can no longer read or remember well enough to balance a checkbook may cope by simply ignoring their bills (or throwing them out), hoping the problem will go away.  Needless to say, it doesn’t.

• Confusion regarding day and date  Everyone is off a day or two every once in a while, thinking it’s the 12th when it’s really the 11th.  But when a person mistakes January for May, or asks if you’ve gotten your Thanksgiving turkey in July, it’s a troubling sign of disorientation, and an indication of cognitive decline.

• Forgetting familiar objects  Forgetting where you left your keys is no big deal–we all do that.  Holding a key in your hand and not remembering what to do with it….that’s a much more serious problem, and a telltale sign of cognitive deterioration.  Not necessarily Alzheimer’s disease (because a number of conditions can cause this symptom), but definitely something serious enough that you should take action.

Robert Bornstein and Mary Languirand are the authors of When Someone You Love Needs Nursing Home, Assisted Living, or In Home Care, published by Newmarket Press.  Here’s the link: http://www.newmarketpress.com/title.asp?id=901

 If you have questions or would like to know more about Caregiving, please leave a comment!  

To find out about Dr. Bornstein, click here to read his bio.

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