Dementia Care: the Benefits of Staying In Their Reality​

timeIndividuals living with dementia or Alzheimers will often speak of their younger years as if it was their current reality.  They tell stories of their childhood home, their parents, and will even feel the need to go home and make dinner for their young children.

Sometimes the need for this reality is so great that they become anxious and even angry when they can’t find what in their mind should be there.

How trapped and powerless they must feel in these moments!  Imagine if we woke up one day and everyone we know and loved were no longer there or if our once routine and purposeful lives were now only a distant memory.

If you’ve cared for someone with dementia you’ve most likely had to “fib” at one time or another. When asked where their mother or father was, you may have said they were at the store; When asked to go home, you may have said it’s too cold to go outside; Or when asked when their kids will be here, you may have replied they are at school today.

These types of answers may not always work as well as we hope they do, but more often than not these responses offer them comfort and a peace of mind in knowing that their mother is still alive and will soon return.

I’ve had many people ask about the ethical implications of lying to someone with dementia or Alzheimers.  However, there are multiple benefits from the practice of being in their reality for both them and us. Because when we engage them in their stories of the past, we learn and connect on their terms, not ours.

Reality Orientation

First, I want to mention the practice of Reality orientation, which is the method of reminding the person with dementia or Alzheimer’s the facts of their current situation. If they wonder where their parents are we tell them that their parents are no longer living or that they can’t go home because they no longer live in their childhood home. We will also remind them of the actual date and time and their current living situation. 

In my experience, reality orientation causes anxiety and can even scare the person with dementia or Alzheimers.  Arguing with someone who has dementia is futile and will often exasperate the situation.  Whether we think they are making up these stories or not when we attempt to correct them we are essentially calling them a liar and taking away any sense of control they may have in telling these stories. 

The Alzheimers Association also stresses the importance of communication with those living with dementia and Alzheimer’s and notes that communication requires patience, understanding, and good listening skills.

Read more: http://www.alz.org/care/dementia-communication-tips.asp#ixzz4r9g3YquZ

Nostalgia

Therapeutic Lying

There are several names we can give to the practice of staying in someone else’s reality:  therapeutic Lying, embracing the reality, or empathy.  No matter what you feel comfortable calling it, the practice itself has multiple uses and benefits for those living with dementia or Alzheimer’s.

Therapeutic lying reduces stress and pain of loss for both the caregiver and the person receiving care.  The Family Caregiver Alliance notes:

People with Dementia Do Not Need to Be Grounded in Reality.
“When someone has memory loss, he often forgets important things, e.g., that his mother is deceased. When we remind him of this loss, we remind him about the pain of that loss also. When someone wants to go home, reassuring him that he is at home often leads to an argument. Redirecting and asking someone to tell you about the person he has asked about or about his home is a better way to calm a person with dementia.”

No matter what strategy or answer we find works best for our loved one staying within their reality rather than bringing them into our own will make them feel more safe and secure at this moment. This practice has a beautiful way of redirecting them so they are no longer concerned about the safety and whereabouts of their loved ones and they can then, in turn, enjoy the moment with you.

Doll Therapy with Dignity for Loved Ones Living with Dementia

pexels-photo-272056Babydolls.  Traditionally, a toy for little girls to play with, hold, and take comfort in has become a popular therapy tool for some individuals living with Dementia. Although this device should not be used for everyone, a baby doll does bring great comfort to those who have had an affinity to caring in their earlier years.

One particular memory care unit I worked on had a whole nursery set up in a quiet room at the end of the hall fixed with two cribs, a diaper bag, and a rocking chair.  These Items, of course, you would not ordinarily expect to see when the average resident was age 92. And yet, two women, in particular, would frequently come in throughout the day to lay the baby doll down for a nap, sing him a lullaby, or like any good mother would show him off to all the other staff and residents.

Sweet and endearing as it may seem the site of an older adult holding a baby doll and “pretending” that it is real can be alarming.  I’ve had several family members come up to me over the years questioning the practice partly out of concern for the persons well-being and partly because a women holding a baby doll is a visible reminder of dementia.

Dolls with Dignity

While caring for someone living with Dementia and Alzheimer’s we have a duty to uphold their dignity.  Dignity is so important that the Right to Dignity is an actual federal mandate in nursing homes. This right is particularly important while using Doll therapy. Like most treatments in Dementia care, while addressing or interacting with the individual and the baby doll, we must always treat the doll as if it were a real baby. And never correct the way in which the individual cares for the baby doll.

It is not uncommon for someone to swaddle and swoon over the doll in one moment only to drop them on the floor (by accident) the next.  They may leave the baby doll lying around, spill food on the doll, or even hold them upside down by the foot.  But this doesn’t mean that WE can do this.  Even if we think that the person isn’t watching we should always hold and treat the baby doll as if it were an actual baby.  Otherwise, they will probably perceive us as negligent, and they won’t be afraid to tell us this either.

 

Alzheimer's care doll therapy
Image Source NPR: Doll Therapy May Help Calm People With Dementia, But It Has Critics

 

There are several common questions people want to ask when they see doll therapy in use, but these questions are often the ones that we should avoid. For instance, we shouldn’t ask what the baby’s name is, how old the baby is, or who the father is.  Most likely they won’t be able to tell you and realizing that they have forgotten such important information can be quite upsetting. Instead, statements like “oh look at those cheeks” or singing a lullaby, are more engaging and empowering ways to enhance the therapeutic nature of baby dolls and will make the individual feel secure and even a bit prideful in that moment.

We don’t have to be ashamed or embarrassed by doll therapy.  It brings great joy and comfort to care for a baby in this stage of their life and your support enhances their quality of life.

 

Does this Mean I should Buy Mom a Baby Doll?

No. As mentioned above, doll therapy is not for everyone, but if you notice that your loved one is feeling a bit more anxious laying a swaddled baby out where they can find them is a good way to see if they are interested.  Even placing the swaddled baby in their arms to see if they attach to them is okay. However, it should not be a forced process, and if uninterested you will surely know.  But, if their face lights up and a big smile appears you will know you’ve just given them a great gift of comfort.

The Use of Robotics in Long-term care Facilities: A Step Into the Future?

 

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Robot and Frank (Click for Movie Trailor)

The use of robotics and other AI Technology in Long Term Care is a highly debated topic, and there are fair arguments both for and against. Their use, however, seeks to solve a  grave concern in the field.  The number of adults 65+ by 2050 is expected to rise to 88 million. At such large numbers, resources are essential to the ability to provide and care for our older populations.

The greatest resource is the caregivers themselves, and currently, there is a significant shortage in the United States. Recruitment of employees is hampered by negative stereotypes of nursing homes and the often deeply emotional realities of caring for someone at the end of their life.

The most common reason people choose to work in long-term care is that they had a good relationship with an older adult (commonly a grandparent) at some point in their lives. The lack of senior caregivers will become a national endemic if the issue is not addressed.

There are several different types of robotics for senior care, but the most commonly used are robotic caregivers, social robots, and teleconferencing robots.  Their use has grown increasingly more popular over the years and can now be found in Japan, throughout Europe, and the US.  As the number of older adults increases, their use could be the solution we are looking for.  But can a robot actually replace the human connection and socialization we as humans need?

The Pros and Cons of Robotics in LTC

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Robotic Caregivers

Designed and developed in Japan, the Robobear is a transfer and lift machine for people who have difficulties getting up and moving on their own.  Traditionally, this is a job for Certified Nursing Assistants who assist in lifting and transferring individuals from the bed to their wheelchair or from the wheelchair to the bathroom.

Nowadays, there are Hoyer lifts and sit to stand lifts which help take some of the strenuous burdens off of the caregiver, but they are still in the room and able to talk or calm a resident during the transfer process.

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The Robobear (as pictured above) is designed to make this process a bit less scary and jarring for seniors. However, the idea that a cute smiling bear is more inviting and more receptive to seniors is a bit unfounded, but it does offer a friendly alternative to the more sterile machine options on the market today. In their use, we should keep in mind the potential for confusion they may cause our residents with dementia or Alzheimer’s.

Prototypes of humanoid robots are still being developed.  And one day we may find that robots that look like humans could replace our caregiving staff.  Although this still seems like an idea of science fiction, Carebots are already developed and on the market and their use is specifically targeted to assist the elderly.

Social Robots

Social robots are developed to simulate real pets.  Most common are dog and cat robots as seen in the video below.  The company Hasbro’s found that their children’s toys were being used by a growing number of seniors and decided to create a line especially for older adults living in nursing homes.

 

These “pets” act and respond just as a real cat or dog would.  The cats will purr and vibrate while being pet and meow in response to being held.  Since pets aren’t allowed in many long-term care settings, this type of companionship is a welcome replacement.  And especially for those living with Dementia or Alzheimer’s can offer a sense of comfort and purpose.

Hasbro is not the first to unroll a line of robotic pet companions.  Japan has a line that was established in 2003, which was purposefully designed as a therapeutic intervention for seniors.  Unfortunately, this line is a bit pricey and not as easily obtained whereas Hasbro’s Lifelike pets are much more reasonable at about $100.00.

Robotic Conferencing

The Cruciferous Vegetable Amplification episode of the Big Bang Theory parodies the idea of sending a virtual self out into the world through video conferencing. Funny or extreme as the concept of this was, this type of technology is available and for the medical field has great potential to allow physicians to be two places at once.

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Image Source: CBS Network

One such technology is the GiraffPlus, already on the market and providing In-Home help care to the elderly throughout Europe.  The GiraffPlus is a vacuum cleaner, monitoring system, environment evaluator, and a telehealth conduit for seniors living in their home.

As the number of older adults remain in their home, these types of technologies make aging in place a sustainable living option even as care needs change. Alternatively, however, does the lack of a personal visit to the doctors or the now “traditional” form of health care offer something more than a teleconference can offer? Particularly to a more vulnerable population for isolation.

Can a robot console the way a human can?

Seven million Americans over the age of 65 suffer from depression. This number will continue to increase over the next several years, but without enough caregivers, it’s hard to care for the emotional and physical needs of our older adults.

And as many movie and TV representations show us, although some robotics are advanced with many capabilities true human connection is not one of them. Although robotics have become increasingly popular throughout Europe, Japan, and the US one French non-profit the Society of Saint-Vincent-De-Paul
 created a short clip that portrays the ill-effects this lack of human console can have on an individual.

 

The Future of Long Term Care

Technology has been incorporated in nearly every field so it is no surprise that we would find a way to advance our caregiving methods. Personally, I am still on the fence when it comes to robotics specifically and maybe only sold on the cute toy kittens and a bit weary of a giant smiling bear capable of lifting a person.

As a field, we still have an opportunity to invest in real live humans to fulfill our caregiving needs.  In an earlier post, Addressing Our Caregiver Shortage through Intergenerational Programs: Introducing our Youth to Seniors Living in Long-Term Care I discuss the importance of intergenerational interventions now so that our youth will grow up wanting to care for their elders.

I would love to know what you think about the use of robotics in Long Term Care?  Is it cool, weird, innovative?  Leave your thoughts in the comment section below!!

Enjoyable Eats: 10 Tips to Make Mealtime More Enticing for Someone Living with Dementia

Eating
Image Source: Pexels Images

Weight loss is a common and harmful symptom for those living with Dementia and Alzheimer’s. Unfortunately, meal times for our loved one can be stressful, uncomfortable, and even embarrassing.  Coupled with a loss of appetite, ensuring our loved ones eat enough calories in a day becomes a top priority to maintaining their physical well-being.

Make meals more enticing and enjoyable for someone living with Dementia by doing these 10 things:

Eat sweets!

The “no dessert before dinner” rule does not apply here.  Sometimes dessert is the only thing your loved one will be willing to eat, so a double scoop of ice cream is sometimes better than practicing a balanced diet.

You can also, make dishes more enticing by adding a sweet touch.  For example, instead of plain green beans jazz them up with some butter and brown sugar.  Not only are they more likely to eat them, but you’ve almost doubled the calorie intake they would have otherwise eaten.

Make a home cooked meal

Preparing a meal at home is a fun and engaging activity that leaves the entire house smelling delicious.  The smell of dinner cooking is a great way to stimulate your loved one’s appetite and will help orient them to meal time.

Pick out the recipes together

If they are willing and able to help,  go through old family recipes together or scope out new ones online or in a magazine. When we allow them to have a say in the menu plan, there is a greater chance they will enjoy the meal as it promotes their independence and autonomy.

Cook Together

Baking and cooking activities can be a ton of fun, but they also require the use and practice of motor skills. Have them assist in mixing in the ingredients or stirring them all together. These steps require minimal assistance while still essential to the process.

Eat Together

Eating is a social activity, and your loved one is much more likely to eat if someone is sitting there eating and talking with them.  Try discussing some favorite meals you had as a child or other priceless memories that occurred around the dinner table.

Assistance with Feeding

Assisting someone in feeding is an incredibly important job that should never be taken lightly.  We are not only tasked with ensuring someone receives proper nourishment we are also responsible for promoting their dignity.

  • Create a simple table.  If possible, only the plate of food and drinks should be out on the table.
  • Identify all food items on the plate.
  • Name the food when giving them a bite.
  • Make sure to offer a sip of their juice or water in between foods.
    • So, if you are switching from the green beans to the potatoes take a moment to drink. It clears the pallet and washes any food they may be pocketing in their mouth.
  • Stay in the moment with them.  It is easy to want to watch TV or work on other things while assisting, but as mentioned above eating is social.  Your loved is more likely to engage in mealtime if you are just as engaged.

You Learn Alot About Somebody When You Share a Meal Together

-Anthony Bourdain

 

As a caregiver, there are many things to worry about when it comes to the care and well-being of your loved one living with Dementia or Alzheimer’s.  Eating should not be one of them.  Although there are many reasons why your loved one may not be eating investing time and trying new ways to enhance the mealtime experience for you both is surely worth it.

A friendly disclaimer: The information, including but not limited to, text, graphics, images and other material contained on this website are for informational purposes only. The goal of this site is to promote broad and more positive consumer understanding and knowledge of various aspects of Dementia and Alzheimer’s. It is not intended to be a substitute for professional medical advice, diagnosis or treatment.

Investing in the ‘New Normal’: Are Companies Afraid to Admit Caregiving is now a Business Problem?

caregiver-stress

Nancy LeaMond (Executive Vice President & Chief Advocacy and Engagement Officer, Communities, States and National Affairs at AARP) reports:

[C]aregiving also has long been, and will continue to be, a business and workforce issue. [S]ix in 10 family caregivers are working while more than one in three are working full time. In fact, the average family caregiver is a 49 year old woman who works 35 hours a week and spends 20 hours a week caring for her mother. At the same time, almost 25 percent of family caregivers are Millennials and the average millennial caregiver is working a full time job. All this boils down to one key point-caregiving and work are the ‘New Normal.’ As workers across all generations are facing the issue of caring for loved ones, employers need to respond.

I’m new to the world of cubicles and water fountain chats, but it has been an enlightening experience, to say the least. I work in public health and every day I share a building with hundreds of different people.

In the short few months I have been here, I’ve noticed an alarming trend in conversations held amongst my co-workers. Where aside from the latest news from ‘Dancing with the Stars’ or the upcoming election, are the in-depth and more personal stories of caregiving.

Just this morning, I walked by a woman noticeably upset at the sudden aphasia (A language disorder that affects a person’s ability to communicate) her father experienced after a recent stroke. She expressed frustration at her inability to understand him, sadness that her father was ill, and exhaustion that now on top of preparing her kids for a new school year she would be spending the next few months searching for care facilities.

And last week, in conversation with a coworker who although has a decent living wage is concerned that her parents, who never saved for retirement, will be retiring just as her second daughter starts college. Responsible for paying for both, she half humorously joked that she has come to realize she will never be able to afford to retire.

In both of these cases and the countless others I have encountered, there was a noticeable trend. As they were speaking, a look of disbelief was in their eyes, a shocked tone in their voice, and a declarative “I don’t know how I’m going to do it” at the end of each story.

‘The New Normal’

The deeply personal stories of caregiving are becoming more frequent in the workplace. And for these workers, strain from outside stressors will undoubtedly have an impact on their productivity and performance. 61% of family caregivers are currently employed either full-time or part-time, and since this number will only increase in the coming years, this issue demands the attention of our businesses.

All across the country, advocates for caregivers  report the push for companies to understand and plan for ‘The New Normal.’ And for good reason, without the flexibility and understanding from businesses, caregivers are faced with the decision to leave the workforce altogether to support the needs of the older adult in their life. Early retirement then puts a strain on their ability to afford their future healthcare needs.

Caregiving as a Business Problem

A work/life balance is an eternal human debate, which stirs up more philosophical discussions too deep to touch on here.  However, we have all felt the pressures at some point to gracefully manage the responsibilities of both.

For family caregivers, the luxury of grace is often too far from reality to even daydream. The average family caregiver of an older adult in America is a 49-year-old female. Too young to retire and still raising a family these individuals/parents/workers/caregivers are left to “figure it out” when it comes to balancing between all of their responsibilities.

Nearly seven in ten (68 percent) caregivers report making work accommodations because of caregiving. -Lynn Feinberg and Rita Choula AARP Public Policy Institute

To not invest in such a vast majority of our workforce population is proving to be bad for business. U.S. companies lose billions of dollars a year due to workers adapting their work schedule to manage their caregiving responsibilities. At such high frequency’s the demands of a caregiver no longer can be just the individual’s problem.

And even more than the companies bottom line is the simple fact that caregiving is stressful! Depression and staff burnout are known side effects of overburdened full-time and part-time worker/caregiver. These conditions severely impact staff morale and the physical health of employees and ultimately the quality of work they conduct in the workplace.

What can employers do?

First, is the acceptance from companies that this is a workplace issue. In recognition, companies will find that there is a range of policies and programs that they can adopt to support their workforce better.

Hold a meeting. You may already have a weekly meeting on the calendar take 5 minutes to announce interest in this initiative and possibly even to survey how many of the employees are in fact, caregivers.

Collect and distribute caregiving resources. AARP is a national leader in advocating for Caregivers. Their program ReAct is an online resource designed for the workplace and offers employers with best practices to support their workforce and maintain productivity.

Start a workgroup. Opportunities for employees to meet with their co-workers and discuss shared experiences can do wonders for the mental health of your employees. Although this meeting could be held before or after business hours holding the meeting during office hours ensures that all employees can attend if they want to.

Consider Telework and compensatory time. The typical 9-5 work day is confining and offers little opportunity to schedule medical appointments for our loved ones where we wouldn’t have to take off work. Teleworking and Comp time provide flexibility to the work week and allow employees to schedule appointments while maintaining productivity.

Investing in our staff creates a more friendly and productive workforce. There are a staggering amount of caregivers with full-time and part-time jobs and the number will only increase over the next few years. Employers have an opportunity to not only foster a healthy work environment within their company but,  also to provide a bit more quality of life for their employees and in turn the older adults that depend on them every day.

Validating our loved ones who no longer connect with words​

Validation

Receiving validation from others, no matter the form, can have a powerful effect on all of us.  Validation lets us know we’ve been heard and that our feelings are important. In both giving and receiving, it can provide our interactions with others with a strong foundation for communication and a better opportunity for a peaceful resolution. Validation transcends the need for spoken communication and targets the human need to have our emotions heard.

Validation is a great communication technique and a key tool to use with our loved ones living with dementia or Alzheimer’s. Their speech may be impaired, but that does not mean they stop communicating with us in other ways.  And when we use validation, we first try our very best to focus on the emotion they are feeling in that moment and not the words they are trying to use.

1. Listen to the tone in their voice.

At first, identifying their exact emotion may be difficult so a good starting point may be too narrow it down to a few emotions. Are they sad, anxious, or afraid? Or are they happy, excited, or playful?

To do this, we may need to ask a few questions or engage in a bit more conversation. You can say, “I can see you are upset, can I help?” this validates that we recognize something is wrong and that we are there for them.

We should then give them an opportunity to express themselves even if the words they use don’t make sense to us. As they finish, we can validate their feelings by saying, “You have every right to be upset.” or “I can see how that can be upsetting.” And if it feels appropriate to redirect the conversation, “How about we go for a walk and get something to drink? I think you deserve to relax for a bit.”

2. Mirror your facial expression to theirs!!

A furrowed brow or a worried looked can say a thousand words.  We may not know what they are worried about, but we can see that they are obviously upset.

In these moments, we should mirror their expression, so if they have a furrowed brow so should we, and if they are smiling, we smile right back! Mirroring their facial expression sends an unspoken validation that you understand how they are feeling.

3. The importance of touch.

A piece of validation therapy is being engaged. If they are pacing back and forth or if they have their hands clenched together there may be something wrong. Try rubbing their back or holding their hand as they are speaking to you or as they pace and always keep eye contact.

It can be extremely frustrating to watch as our loved ones struggle to communicate, but we should always allow them to try. They still have feelings that are worth listening to and this technique allows our loved ones to know that they’ve been heard and understood.

Validation Therapy was founded by Naomi Feil. In the video below, she demonstrates how important validation therapy can be to a person living with dementia.

 

For more on Validation and Redirection read Validation and Redirection Therapy for Dementia from Caring.com

5 Reasons why your loved with dementia tells you they want to go home

home imageFrom the moment we are born, where we live becomes a foundational part of our identity. We cherish the home for its ability to protect us and to provide us with space to just be.  It is in our home, we have privacy, autonomy, and security.

As such an immense part of our lives, it is no wonder our loved ones living with dementia tell us, “I want to go home.” For caregivers, this sentiment can be a difficult thing to hear, however, when we begin to understand why our loved one wants to go home we will be better equip to make them feel both safe and secure at this time.

Below are just five (out of the many) reasons why your loved one feels the need to go home, even as they sit in their living room.

1. They  feel tired

Asking to go home often means that they need to rest. They may be tired from the day’s tasks, which is not entirely different to our own desire to go home after a long day at work!

2. They may be referring to their childhood home

I once knew a woman who had trouble remembering the current time and place. Amazingly she could tell me the name of the street she grew up on, the color of paint on her bedroom wall, the names of all of their neighbors, and even the neighborhood gossip…like poor Ms. Jenkins whose husband never mowed the lawn.

3. A longing for the comforts of home

Our loved ones may not recognize their surroundings or may be feeling scared or insecure.  Telling us they want to go home may mean they are trying to get a piece of that comfort and security back.

4. Try to recall your most recent conversations

Did you mention that you may have to go soon or that you need to pick something up for dinner? Your loved one may have picked these up as social cues.

5. Their internal clock

Call us creatures of habit, but when you spend a lifetime of leaving work at 5:00 pm, to go home, and make dinner the routine can be hard to break.  And why wouldn’t it?  Don’t these types of activities give us a sense of purpose; A sense of security; A sense of self?

Whatever their reason for wanting to go home may be, reassuring them that they are already in their home will not always work. In this moment, it is extremely important we meet them in their reality. For any of the reasons listed above, your loved one wants to go home, and we should validate that feeling for them.

Luckily, sometimes all it takes is a trip down memory lane to sooth their homesickness. For instance, ask about their home. Did they have a big house? Did they have a fence or a garden? Did they share a room with their sibling and did they mind? Let the conversation guide you and be sure to pay attention to the (sometimes silent) cues your loved one is giving you. If they become anxious, take a step back and slowly transition the topic to something else like food or music.

For other tips and topics to reminisce with your loved one try The Caregivers Activities Source.