Family caregivers have been named the backbone of the long-term care system – and for good reason. Says the U.S. Department of Health & Human Services, more than 50 million people currently provide care for a chronically ill, disabled or aged family member or friend during any given year. Peter Arno from the Department of Veteran Affairs at NIH (National Institutes of Health) estimates this multitude provides $306 billion in “free” services each year, an amount that is nearly double the amount spent on homecare and nursing home services ($158 billion).

Whether you’re a card-carrying member of the Sandwich Generation, a teenager caring for an elderly grandparent, or a mother caring for a disabled child, family caregivers hold immense value in our society, far beyond the stunning dollar amounts mentioned above. Perhaps they are not recognized in the way they should be, but we certainly could not do without them. In fact, in the years ahead, people over 65 are expected to increase at a rate of 2.3%, while the number of family members available to provide care will increase at a 0.8% rate, as per Katherine Mack and Lee Thompson of Georgetown University.

The National Family Caregivers Association is an excellent resource for the A to Z’s of caregiving…their website is full of statistics, connections to resources, media information, surveys and reports, forums, educational materials, how-to guides, webinars and more. And, as November is National Family Caregivers Month, a number of additional resources are offered, such as a free national teleclass on an important caregiver issue: “Safe & Sound: How to Prevent Medication Mishaps”.  To register for the class or peruse the plethora of other materials on the site, go to http://www.thefamilycaregiver.org/national_family_caregiver_month/.

A support system of neighbors, colleagues, friends, or even an online community is crucial, no matter what type of caregiving situation you are in. Without it, and without a healthy amount of respite, caregiver burnout can be a dangerous downward spiral. Burnout can sneak in unnoticed; all too often, caregivers are so wrapped up in the care needs of their loved one that they don’t realize how their own needs have been neglected.

If you want to provide the best care possible to your loved one, be sure to take care of yourself. Think of it as the process that’s explained on every flight before takeoff: in the case of a sudden drop in cabin pressure, oxygen masks will lower. Take the time to put yours on first before helping another. In the same way, consider your care and well-being with the same concern and level of priority as you do your care recipient. There’s nothing selfish about it – your loved one is dependent on you for their daily needs, and you need to be in the best shape possible to provide it.

Honor those who have cared for you. Admire those who are caring for someone you love. Support someone who is facing a difficult caregiving crisis. Share the National Family Caregivers Association website to a friend in need. Celebrate the caregivers in your life during National Family Caregivers Month (and all year-round, for that matter)!

- Michelle Seitzer

SFL followers, who are you thinking of during National Family Caregivers Month?

Baby doll therapy is something that I’ve never been too sure about. During my senior living days, I observed many Alzheimer’s patients hugging, rocking, burping, or carrying a baby doll throughout the halls of the memory-impaired unit. In a way, it seemed to soothe the person. The doll provided someone, something to care for, and I’m sure it reminded the person of precious memories from the early days of parenthood (maybe even as early as the days of their own childhood, being rocked by their mother or father). So I can’t say I’m opposed to the idea – if it brings comfort or joy to the person whose memories are quickly escaping them in the fog of Alzheimer’s, then by all means encourage it. On the other hand, I do think that the facility staff must be aware of this therapy and educate themselves accordingly, which also means unit staff should carefully select the dolls available for use, provide appropriate accessories, and replace dolls when they are worn out or dirty.

It seemed that many of the relatives and friends who visited the unit were somewhat disturbed or distressed if their loved one was seen carrying a baby doll. Again, education in the form of communication from unit staff would be helpful – perhaps if families knew the benefits, they would be more comfortable with the idea. Let’s face it – precious little about the Alzheimer’s journey is comfortable, so it requires a great deal of evaluation/re-evaluation, and above all, flexibility and openness from those who are along for the wild ride. Family and friends must also remember that their loved one is suffering from a disease; behaviors like playing with a baby doll are not exactly normal at an advanced age, but it is not a result of senility or “falling off the rocker.”

According to the Alzheimer’s Store website, where you can order a variety of these dolls, baby doll therapy offers many benefits:

“A baby doll can…

• Calm someone who is upset;
• Provide endless hours of hugs and smiles;
• Lull a person to sleep;
• Create a distraction from a dangerous, harmful or upsetting event;
• Serve as an attention-getter;
• Provide a tool for social interaction;
• Regenerate warm, nurturing feelings of once again caring for a young child;
• Make it possible for someone, totally dependent upon others, to care for ’someone’ else.”

To order a baby doll or find out more about other unique products for persons with Alzheimer’s or some other form of memory loss, visit http://www.alzstore.com/index.html.

SFL readers, what do you think about baby doll therapy?  Share your thoughts here!

- Michelle Seitzer

This guest blog post is contributed by Boomerater, a free online resource for Baby Boomers helping you find everything from wealth planners to romantic getaways. Seniors for Living contributes its properties to Boomerater’s assisted living directory.

A new Q&A discussion from Boomerater’s forums appears here each Friday. In this week’s post, members share their advice about adding a stair lift.

Question: My mother is coming to live with us, but the only bedroom we have for her is on the second floor of our two-floor home. We are considering adding a stair lift. Any words of advice?

Reply #1: Installing a stair lift was a big help for us. When my father came to live with us, we actually thought about adding a first-floor bedroom to the house. When we learned how expensive that option would be we looked into adding a stair lift. We decided on the Harmar Pinnacle. It was a great decision. Dad had no trouble operating it, and it took up less space in the stairway than we had anticipated.

Reply #2: Hire a CAPS-certified contractor to review your home for accessibility; they have great ideas and can look at your home with a critical eye for safety. You may need to modify doorways for a wheelchair for the future, and a main floor bathroom. The most important thing to remember when modifying for a lift is that you need a good fire escape route. If the power is out, how will you get your mother safely out the door? You can have the house wiring modified to have an always-on generator that backs up your primary system.

These are things that your CAPS certified contractor is trained to review your home for. Every home is different, and that’s their specialty — making homes safe and prepared for people to age in place adapting homes to the changing needs of family members utilizing principals of universal design.

Reply #3: I would advise also thinking about preparing an accessible bathroom and a zero step entrance into the home, because it sounds like she’s declining and she could use the extra attention to safety!

Add your own comments or find out what others had to say about adding a stair lift on Boomerater.com.

If you follow SeniorsforLiving on Twitter, or read our blog often, you know how much we value the relationships we’ve made on the social networks. Thanks to the people we’re “following” and those that we’re starting to “Fan” or “Friend” on Facebook.com, we’re discovering new sources of important information about senior care and housing, caregiving and home care, boomer issues, and more.

It’s enabled us to form synergies with like-minded companies, organizations, and individuals with whom we share a passion, a commitment, and a dedication. Although we have, at times, recognized our social network colleagues in our blogroll (see “Follow Friday Love” at right), we thought it would be useful to compile some of our favorite senior and boomer bloggers on Twitter in one all-inclusive list that we invite others to add to via the comments section.

We hope you’ll enjoy our new feature, and want to let you know that we will be adding to and enhancing this list in coming weeks.Want to be the first ones to find out when? Follow us on Twitter or Fan us on Facebook if you’re not already doing so.

“But I don’t know what to say when I visit” is the all-too common defense when a loved one has Alzheimer’s or a related dementia. Sometimes, it is just too difficult to see the person you love in such an altered state; other times, it is simply lack of what used to be normal conversation. What do you say when Grandma can’t remember the word for “hello” – or even your name? When Dad looks at you helplessly, clearly seeking your face for the answers to so many questions, how do you even make small talk?

Nadine Rudner Brechner watched Alzheimer’s unravel her mother’s independence and identity for eight years. Despite his own illness, Nadine’s father, Moses Rudner, served as the primary caregiver for his wife until he passed away. As Moses, Nadine and other family members struggled with the inherent challenges that Alzheimer’s brings, they confronted one of the most common frustrations for caregivers: keeping the care recipient engaged in meaningful, age-appropriate activities. They tried using children’s books and songs, but neither could fully stimulate Charlotte Rudner.

As Nadine says on her website, “They say that necessity is the mother of invention, and in our case the ‘mother’ is mine.” Thus, Nadine set out to design and publish a simple, illustrated book (with large, easy to read type) that would include topics to “facilitate conversation and spark memories.”

And so it was that Memory Triggers came to be.

Memory Triggers is a series of 3 books, spanning the three most memorable decades in the lives of today’s elders: the 1940’s, 1950’s and 1960’s. With clear, readable fonts, colorful images (both graphics and photographs), and plenty of white space to make it easier on the eyes and the Alzheimer’s mind, the books are filled with events, places and people that are easily identifiable to those with cognitive impairments. Caregiver notes and simple words also aid in the process of engaging the loved one in reminiscence and conversation, covering everything from cars and food to movie stars and sports (over 300 memories in 20 categories).

There is something for everyone to enjoy, both on the giving and receiving end of the books. The baseball buff nephew can flip ahead to the sports pages when he visits his uncle in the nursing home and start the conversation there. The grandmother who doesn’t seem to recognize her granddaughter might quickly recognize a picture of Ingrid Bergman – which just might spark a memory of the summer days when the two used to watch “Casablanca” together during sleepovers at Grandma’s.

The books might serve as a security blanket for nervous visitors, but they might also provide hours of independent enjoyment for the person with dementia. In a world where everything has become unrecognizable, flipping through the pages of a book filled with familiar faces and places could be very reassuring.

Visit www.memory-triggers.com to order the books (only available online), read the reviews of Nadine’s series, or to view a sample page. It might be just the thing to get your reluctant teenager to visit Grandpa – or maybe your older, still-in-denial brother to visit Dad. Maybe you, the spousal caregiver, need a fresh way to communicate with your wife and remember happier times.

Nadine Rudner Brechner understands the Alzheimer’s journey for caregivers. She has taken a difficult aspect of her own experience and transformed it into something useful for many following the same thorny path. Great work, Nadine!

SFL followers, what is the most difficult part of your Alzheimer’s caregiving journey? How have you confronted it?

- Michelle Seitzer

Although my husband is only a reservist in the United States Coast Guard, we still take advantage of every perk, discount, or resource that serving in the military has to offer – and we constantly share those opportunities with anyone we know who might also be eligible.

Ted Gumley has created a successful business by sharing one valuable opportunity for senior veterans and their spouses: the Aid & Attendance program. I recently had the pleasure of speaking with Mr. Gumley, a World War II veteran who has owned a number of assisted living facilities and now serves as CEO of Senior Care for Veterans.

Senior Care for Veterans is a private company with 15+ years of experience that consults and assists as to the criteria required to qualify for VA pension through Aid & Attendance, a non-service connected disability pension that can help cover the costs of long term care for qualified veterans and surviving spouses. According to Ted, most veterans don’t know anything about this valuable benefit; in fact, while 33% of all senior citizens in the U.S. are entitled to Aid & Attendance, only an estimated 5% of those eligible are actually receiving benefits. Of those enrolled the program serves 7% of surviving spouses and 34% of veterans eligible.

The $3.3 billion pension program is housed at the VA (Veterans Administration), but the VA is legally prohibited from advertising it. In addition, the fractured nature of the VA and cut backs in personnel contribute to the difficulty of processing benefits for program enrollees, so the VA counts on companies in the private sector to help applicants navigate the confusing and inconsistent requirements needed to secure funding.

And just how much funding can be secured? Eligible applicants can receive up to $1,948 per month or $23,376 per year. “People have cried on the phone because they are so happy to receive the help,” says Ted. It’s not hard to see why – in today’s harsh economic climate with funding for seniors being slashed nationwide and the cost of long term care increasing rapidly, this pension program is a lifesaver for countless seniors and the family members struggling to pay for their care.

Senior Care for Veterans has helped more than 15,000 vets and their surviving spouses receive the financial help to which they are entitled, at a 99% success rate. They have worked in 42 states advising assisted living facilities and home health agencies in guiding applicants through the process too.

–Michelle Seitzer

It’s time to fall into autumn with our September 22, 2009 edition of Boomers and Seniors – News You Can Use. The chillier weather makes this season the time of year when you just want to snuggle up and stay inside. But there’s a harvest of opportunities to enjoy, even when it’s brisk out there! Read on for great resources about staying active and informed this fall. And, if it’s inspiration you seek as the days get a bit gloomy, look no further than this recent SeniorsforLiving.com post about Dr. Joseph Kirsner. He just celebrated his 100th birthday in a very unique way. Find out here!

Fourth in a series of four; read part 1: Setting a Firm Foundation; read part 2: A Successful Action Plan; read part 3: Meaningful Activities

Clearly, creating a dementia-friendly home is a complex, dynamic and lengthy process that cannot be accomplished in a vacuum of peace and quiet. Caregivers must integrate these changes on a daily, sometimes minute-by-minute basis, while simultaneously dealing with the often frustrating behaviors of the loved one in need. Having a list is extremely helpful for bringing all of these pieces together in one place. The Alzheimer’s Association has created an excellent tool that breaks the process down room by room:

Kitchen

• Lock up cleaning supplies
• Turn off electricity to the garbage disposal
• Hide knives and other utensils
• Store small appliances (toaster, blender)
• Unplug larger appliances (microwave)
• Remove knobs from the stove; hook up stove to a hidden gas valve or electric switch
• Keep fire extinguisher nearby
• Clean out refrigerator regularly

Bathroom

• Set water temperature to 120 degrees or less
• Install grab bars
• Add textured stickers to slippery surfaces
• Supervise the use of hair dryers, curling irons, and electric and hand razors
• Remove locks from the bathroom door
• Take dangerous items out of medicine chests

Bedroom

• Avoid using electric blankets
• Monitor use of heating pads
• Install night lights between the bedroom and bathroom

Garage

• Lock up hand and power tools (drills, axes, saws, picks)
• Limit access to large equipment (lawn mower, weed trimmer, snow blower)
• Lock up poisonous chemicals (paints, fertilizers)

Throughout the home

• Disguise outdoor locks or install dead bolts
• Remove or tape down throw rugs and carpeting
• Apply colored stickers to large windows and sliding glass doors
• Remove poisonous plants
• Create an even level of lighting near doorways, stairways and between rooms
• Remove objects that block walking paths
• Remove and disable guns or other weapons

Outdoors

• Disconnect gas from gas grill
• Lock fence gates
• Supervise the person, especially in areas that are not enclosed
• Put away car keys

While it might be easy to follow a checklist like the one above, creating the action plan to prevent boredom, maintain independence and ensure caregiver/care recipient’s safety is extremely difficult and quite intangible. It can’t be crossed off a list, as there is no standard template for such a plan because it is so highly personal. Only you and your care team can be the ultimate experts on what is best for your loved one – and throughout the Alzheimer’s journey, you will learn and re-learn exactly what that looks like.

The journey of caring for a loved one with Alzheimer’s or a related dementia is one that must be taken seriously and taken in stride. There are necessary changes to make your home dementia-friendly; sometimes, those changes must be undone. Don’t fret if this is the case; just make the changes and move forward. Expect the unexpected. Know that even the best-laid plans may change.

As more people choose to provide care at home for as long as possible – both due to the rising costs of facility-based care and the individual’s desire to remain at home and maintain independence and dignity – this is clearly a challenge facing many modern-day families. You are not alone. Join a support group in your community, or find someone you can talk to about your day-to-day experiences. And remember, it takes a village.

-Michelle Seitzer

Third in a series of four; read part 1: Setting a Firm Foundation; read part 2: A Successful Action Plan

Focusing on the person and not just the physical environment is another important building block in creating a dementia-friendly home. Clearly, it is more than just putting locks on cabinets and alarms on doors. What are your loved one’s hobbies? Which activities did he participate in on a daily basis before the diagnosis? When she had time for herself, what did she do? A diagnosis of Alzheimer’s does not mean these activities cease; in fact, it is vital to continue these activities as long as the individual is able or interested.

According to the Alzheimer’s Association, effective activities bring meaning, purpose, joy and hope to the person’s life; use the person’s skills and abilities; give the person a sense of being normal; involve family and friends; are dignified and appropriate for adults; and are enjoyable.

“Meaningful, purposeful activities allow persons with dementia to stay home and be successful,” notes James Siberski, MS, coordinator of the Gerontology Education Center for Professional Development and an assistant professor of gerontology at College Misericordia. Siberski is also an adjunct professor of psychiatry at Pennsylvania State University.

Christa Caruso, BA, is a research interviewer at CARAH (Center for Applied Research on Aging & Health). She agrees with Siberski’s assessment that the CR should stay involved in regular activities around the home, such as setting the table for dinner or helping with laundry (provided that the CR does not get frustrated with these tasks). These responsibilities affirm that the person with dementia is still contributing as an active member of the family.

Siberski believes that maintaining the brain is a fundamental part of creating a dementia-friendly home, whether this is achieved through computer programs, Sudoku puzzles, or other brain-related exercises. “We have to keep challenging the person,” Siberski says. One of his clients, a 95-year-old woman still living at home, just finished a major exercise that challenged both her brain and her physical dexterity: sorting a massive collection of nuts and bolts. Although the project took months, Siberski’s client enjoyed the task – and it served a purpose.

Look to the individual’s life history for cues on activities: tasks like snapping peas or husking corn might be comforting and familiar to the woman who grew up on a farm or prepared meals from scratch. Taking a small motor apart and putting it back together could be highly rewarding for the man who was fascinated by mechanical objects. Tailor the activity to the person and remember that the diagnosis does not erase their who they are as people.  As long as the activity holds meaning and purpose for the individual, it does not matter whether the caregiver really needs the nuts and bolts sorted or the peas snapped.

The television is a central component in many American households and is often misused or abused regardless of a dementia diagnosis. All too often, persons with dementia either in home or residential care settings are placed in front of the TV for hours on end for any number of reasons, such as lack of activities, staffing, or overmedication. At home, situating the PWD (person with dementia) in front of a television for extended periods of time may be a product of caregiver burnout; perhaps the caregiver would assert that their loved one enjoyed watching TV before the diagnosis, so the activity is justified.

While there may be some value in viewing certain programs or movies (and by no means should the caregiver feel overwhelmed with the idea that they must “entertain” the PWD every minute of the day), Siberski cautions specifically against watching news programs.

The PWD can pick up on the dire tone of most news programs, which increases agitation even if they cannot comprehend the topics covered, says Siberski. However, game shows are great in Siberski’s book. Most game shows have an overly positive tone. Think “you’ve just won a new car” as opposed to “Forty innocent people were killed by a car bomb in Iraq today.”

If watching the evening news was a regular, meaningful activity for the person with dementia prior to the diagnosis, you may want to closely monitor their response for an increased agitation level and perhaps reduce the length of time that the individual spends watching the news. Also, be sure that when the television is on, the volume is not too high. If you need to ask the care recipient a question, mute the TV so that your loved one can focus on your question without competing noise.

Remember, respite for the caregiver is important and necessary, and it can be accomplished in a number of ways – perhaps an appropriate video or TV program that engages the CR’s interest provides one of these opportunities. However, opportunities for respite must not come at the expense of the care recipient. Ultimately, keeping the care recipient’s agitation level down is the goal – and by doing so, the caregiver’s agitation level will also be held in check.

- Michelle Seitzer

Next installment: Bringing It All Together

Second in a series of four; read part 1: Creating a Dementia-Friendly Home: Setting a Firm Foundation

Getting back to the simple yet complex question of “where does one begin?” we look again to the Alzheimer’s Association. Here are five simple steps to begin the process of creating a dementia-friendly home:

1. Assess your home: Look at your home through the eyes of a person with dementia. What objects could injure the person? Identify possible areas of danger. Is it easy to get outside or to other dangerous areas like the kitchen, garage or basement?
2. Focus on adapting rather than teaching: Avoid trying to re-teach the person about safety. Instead, identify possible risks and take precautions.
3. Simplify the activities: Most accidents, especially in the area of personal care, occur when the person is rushed. Break up activities into simple, step-by-step tasks, allowing the person plenty of time to get tasks done. Give extra help with tasks that have become hard to do.
4. Support the person’s needs: Try not to create a home that feels too restrictive. The home should encourage independence, social interaction and meaningful activities.
5. Be realistic about what you can do: You can’t prevent every problem. Rely on your common sense while paying close attention to objects or activities that could be dangerous.

Keeping these principles in mind will be critical as environmental, emotional, and other unexpected barriers present themselves. Building a home requires careful planning and meticulous craftsmanship; creating the home to adapt to your loved one’s ever-changing needs is the same.

A personalized action plan – your own blueprint – is highly recommended by professionals like Catherine Verrier Piersol.  Piersol, MS, OTR/L, serves as the Clinical Director for Jefferson Elder Care and the Jefferson Center for Applied Research on Aging and Health (CARAH). She is also an Assistant Professor for the Department of Occupational Therapy at Thomas Jefferson University.

“We (at CARAH) have developed a standardized approach to prevent certain problems from occurring within the home,” says Piersol, who firmly believes that negative outcomes such as wandering can be prevented if this proactive approach is taken.

Piersol and the team of experts at the Living Laboratory, which is housed in CARAH and serves as a venue for hands-on research and interventions, work with clients to create a strategic, problem-solving approach that identifies antecedents to behavior (triggers). The team considers what the individual’s trigger might be before anything happens, then seeks a way to make the environment conducive to prevention.

A common trigger is boredom; in this case, Piersol and her team would help caregivers figure out what type of activities will engage the care recipient. Knowing the trigger can change the consequences of the behavior – all before the problem actually occurs.

If the person is prone to wander, for instance, alarms on doors is one possible solution. A creative approach: Cover doors that lead outside with a mural that looks like a bookcase (The Alzheimer’s Store is a good source for such creative equipment for home adaptations), or even a simple stop sign, which is easily recognizable to a PWD. Meredith Gordon, safety expert for the Alzheimer’s Association, recommends placing a small black area rug in front of a door; the person with dementia may see it rug as a black hole and give up on that exit.

According to Piersol, there are four key elements (explained in greater detail in a podcast on the CARAH website) that support an action plan and encourage its success:

1. Create a clutter-free environment (remove misleading stimuli; minimize background noise such as the radio or TV; put items away when you are finished using them, etc.).
2. Communication strategies: the caregiver’s reaction and approach (both verbal and non-verbal) can change everything.
3. Simplifying tasks: for example, if the PWD is having problems brushing his teeth, you may just need to model the action first, or prepare the toothbrush with water and paste before handing it to your loved one.
4. Engagement in activities is crucial to preventing boredom, depression, and agitation.

Almost all of the CARAH team’s interventions with elderly clients are done in the home or community setting. “Our approach for working in the home also takes in the unique cultural environment,” she adds. This is important, because it will help reduce the care recipient’s agitation if the spirit of your home remains intact even as changes are made to ensure safety.

Although my grandfather was limited to a hospital bed in his master bedroom during the final months of his battle with Alzheimer’s, our family had done their best to keep the spirit of the home intact in that small space. Several of his favorite woodcarvings, postcards from the grandchildren, and pictures of family members and his childhood home in Norway were hung within his line of vision. The inevitable collection of disposable undergarments, medications, and rubber gloves was difficult to avoid, as these items needed to be handy, but there were enough warm, sentimental items to keep it from feeling too much like a sterile hospital room.

Although it took a few arrangements before all were reasonably happy with the outcome, it was well worth the effort. Remember, flexibility is the cornerstone of this building process… and it takes a village to do it.

-Michelle Seitzer

Next installment - Meaningful Activities