Family caregiving is an honourable endeavour and can be intensely meaningful and fulfilling. But not all families are the same, and there are some situations where family caregiving for an elderly parent or relative may not be suitable.
In some situations, attempting to be a family caregiver can actually cause more upset to the overall family than enlisting external help. If there are tensions or divisions within a family, the added stress of family caregiving can cause a further divide. It is wise to step back and consider the whole family and the dynamics at play within your own personal family before attempting to take on family caregiving.
Here is a Top 5 list of situations when family caregiving may cause more strife than benefit.
1. Sibling Rivalry was Never Outgrown
Do you still squabble with your siblings as much as you did when you were children? No one can get your blood boiling as quickly as a sibling who can reignite decades of rivalry in one snide comment! If this is the dynamic you have with your siblings, then family caregiving will be a particular challenge.
Family caregiving can be challenging in and of itself; add sibling rivalry and the emotional toll just jumped to a whole new level. Siblings who exert more effort competing than cooperating will not likely set their personal issues aside and be completely agreeable over care for mom or dad.
When there are long-standing sibling rivalry issues it often ends up feeling as if you can’t do anything right.No matter which action you take, it is misinterpreted by your siblings. You provide hands-on care, it is criticized; you step back to allow your siblings the opportunity to participate, and you’re labelled as “uninvolved” or “being selfish”.With dynamics like this at play, involved family caregiving likely won’t heal sibling wounds. Rather, there is a great risk that the sibling divide deepens.
In family caregiving, the recipient of care—your elderly parent or grandparent—needs to be the focus. Sibling rivalry can’t continue to be the main issue at hand. Out of fairness to your elderly loved ones, you may want to enlist external support so that long-standing sibling rivalries don’t rear again over family care.
2. Your parent is intensely private or modest
Every family has different comfort levels around privacy and personal care. For someone who was intensely private and modest her entire life, she may find it terribly uncomfortable to have family or friends assist with personal care, such as bathing or toileting. An elderly mother may not wish to have her sons bathing her—and her sons are often even more uncomfortable with personal care than is she!
For these families, the kindest option is to have someone else provide personal care—someone who was not previously known to the elderly mother. This way, she can maintain her dignity and privacy in front of her sons, her daughters-in-law, and her friends. Receiving support from a caregiver whose role it is to provide personal care is exceedingly different than forgoing privacy and modesty in front of family and friends.
Some families are surprised to learn that their elderly fathers often have the same high threshold for privacy. People aren’t surprised to hear that an elderly mother does not prefer to be bathed by her sons; not everyone is aware that the inverse—a daughter bathing her father—is equally as uncomfortable in some families. It is less about gender and more about personal preference and maintaining dignity.
The role reversal between parents and children is a complex issue that is deeply personal. It is challenging enough when adult children are suddenly managing schedules and household needs; crossing into the realm of personal care can exacerbate the role reversal. For many elders, they feel that they are losing their last shred of dignity and decency if their adult children begin assisting with personal care such as bathing, toileting, or incontinence.
Family caregiving may be best provided in realms other than personal care in an effort to protect the privacy and dignity of elderly loved ones. Families can express their love and devotion and willingness to assist in a myriad of other caregiving capacities while leaving personal care to a professional.
3. Personality Clashes
Let’s face it—most families are not like the Brady Bunch. Not everyone gets along, and there are decades of history by the time caregiving for elderly family members arises. The elderly grandfather who suddenly needs assistance does not develop a new personality just because he suddenly requires care. If he was ornery his whole life, it is likely he will be ornery in his senior years too!
If he burned bridges with various family members in the past, it may be unrealistic to expect family members to set aside their grudges and hurt and begin family caregiving for Grandpa. In addition to past hurts that may be resurrected, those same family members are now exposed to a whole new host of potential personal insults.
In this case, the family are not in the best position to be caregivers. They are not as likely to be able to provide exceptional care because they are distracted by personal issues. Grandpa is also less likely to be a gracious recipient of care from family members with whom he is accustomed to being ornery. There is a better chance that Grandpa will actually be kinder and more satisfied receiving care from someone outside the family—someone with whom he does not have a long-established pattern of orneriness.
It may not even be something as notable as decades of family patterning. It may just be that parent and child have two different personalities or styles that clash in a caregiving situation. Perhaps an elderly father prefers to be very detailed, slow and meticulous, doing things in the particular way that he has always done. His adult daughter—who loves him dearly and is trying so hard to help—is fighting her natural tendency toward efficiency. She wants to accomplish tasks quickly since she is already torn between her demanding career and her own family waiting for her at home.
The father and daughter have different styles and different personality types—something that may have been complimentary at other stages in life. But when it comes to caregiving and ensuring that her father has the quality of life that he prefers at whatever pace is comfortable to him, his daughter would be well-advised to step back and allow a professional caregiver to assist her father in the way he needs. This way, when she does visit, the daughter will be able to relax and match her father’s pace because she won’t feel burdened by an overwhelming to-do list. The differences in their styles and personalities can be eased by a professional caregiver, rather than being exacerbated by family caregiving and creating family tensions where none need to exist.
4. You’re just not a caregiver at heart.
Truth be told, you’re just not the caregiving type. We can’t all be good at everything; being compassionate, gentle and patient just aren’t your top strengths. There’s a reason you didn’t become a nurse or an activities director at a retirement home. You know your strength, and it isn’t caregiving.
There’s no shame in acknowledging that you’re just not the right person for the job. Your strengths can be utilized in other ways to support your elderly loved one. Maybe you’re a numbers gal and you can ensure bills are paid and finances are up to date. Maybe you’re a handyman and you can take care of the house and property for your loved one. Those are important contributions.
But when it comes to personal care and more intimate needs, you would be wise to enlist the support of someone who is particularly compassionate, gentle and patient for the sake of your elderly loved one. They deserve the best and a trained caregiver can provide what you cannot.
Often people are thrust into a position of family caregiving; it’s not something for which they volunteered. It certainly isn’t something for which they’ve trained or been educated. Circumstance just places them in the role of “primary caregiver” and it’s a far bigger responsibility than they expected.
Elderly husbands are often the most stark examples. After being married for 60 years, the woman of the house develops Parkinson’s. The household had been her domain; work outside the home was her husband’s domain. They’re now retired and she is unable to do many of the tasks associated with maintaining a household. Her husband is inept with household tasks; in his 78 years, he has never been the primary cook or housekeeper. He’s at a complete loss. He doesn’t have the aptitude or the skill set to be a great caregiver. If left to muddle through on his own, it will be his wife who bears the brunt of it. His wife deserves professional care that will attend to all her needs and provide her with coping strategies for Parkinson’s. The couple deserves to maintain the lifestyle they have always known.
If someone is just not cut out to be a caregiver, it is wise to let them contribute in ways that suit their abilities while enlisting other caregiving support so that the person who needs assistance is not disadvantaged.
5. You don’t live locally or you travel frequently
Today’s families are more spread out geographically than ever before. Family members may be time zones apart, and visiting regularly just isn’t possible. When you do visit, you stay for a week at a time and try to get everything mom needs, but you’ve noticed that each time you visit, she needs a little more than last time. You feel bad that she’s on her own between your visits, and you worry about her more and more all the time.
It’s more than just stocking up on groceries and running errands. You want to know that mom has a reliable caregiver to accompany her to appointments since doctor’s appointments cannot always wait until you’re in town. Even keeping track of appointments has become overwhelming lately; having someone to help keep track of scheduling and appointments would be a welcome relief.
You want the best for your mother. She deserves consistent care that isn’t dependent upon your work schedule. You also want the peace of mind that someone is checking in on your mom, even when you are not in town.
If your family fits into any of these 5 categories, then family caregiving may not be advised. Family caregiving is highly stressful and involved in the best of situations, but if you add any of the above five elements, you may want to enlist some additional care for your ageing loved ones. The elderly loved one who requires care should remain at the centre of all decision making, rather than being distracted by the challenges that these 5 situations present.
It’s okay to admit that your family is better suited to enlisting caregiver support from outside the family. Doing so maybe just the thing your family needs to keep everyone sane and happy!
What does exceptional dementia care have in common with an Improv Drama 101 Class?
In both cases you should never say “no”. Instead you say “yes and...”
Drama workshops will have participants interact in a group. One person starts the conversation and activity. It’s up to the next person to carry it on and not let the dialogue or action fall flat. If in doubt, you respond with “yes and...”
If the first drama participant says “did you see that dog run past?” and the second participant responds with “no” it completely shuts down the improv drama. Instead, the second participant is supposed to respond “yes and I think he was chasing a cat.” This creates an opportunity to keep the conversation going. The first participant now has something to build on. “Oh really? I hope it wasn’t my cat he was chasing.” Now the second participant can build on that “Oh you have cat? What type?” and the conversation continues.
Believe it or not, this skill set is highly useful in advanced dementia care. Those two simple words can open up an entire world of dialogue, just as though it were an improv class.
When someone has advanced dementia, their brain operates differently than your brain. Someone with dementia cannot match your thinking, but if you try to understand what they are perceiving, you have the chance to tap into their world just a little bit.
When your mother with advanced dementia declares “I got married last weekend you know.” You might be tempted to respond with the facts: “No mom. You got married 61 years ago and you haven’t been to a wedding in years.” You are factually correct, but you have also lost the opportunity to have a great conversation. Your mother might even become agitated trying to get you to understand her perspective.
The conversation will be far more effective when you use the drama concept of “yes and.”
Instead, when your mother says “I got married last weekend you know,” you might reply: “yes, and I’ll bet you were a beautiful bride.” Instead of focusing on the facts on when the wedding took place, you’re answering in a way that promotes conversation. Your mother might just sigh wistfully and say “I think I was…” If she’s enjoying this reminiscing, go with it: “yes, and did you wear a veil? What did it look like?” guide your mother down memory lane, and if the memories are embellished, that’s okay too!
However your mother remembers a happy moment is hers to have; facts are less critical than feelings. The “yes and” concept can be applied in many situations and it’s not limited to just “yes and…” It’s the concept that counts. In many cases, asking questions can be very helpful to better understand the reality that your loved one is living in that moment.
When your mother asks “Who are the children that are playing in the yard?” and you look out the window and don’t see anyone and say “No one is there Mom. I don’t see anyone,” the conversation ends and you lose the opportunity to see her reality at that moment. In this case, more questions might work better than “yes and.”
You might respond: “Oh, what are the children playing?” and see where it takes you. It gives the chance to have a conversation that matches your mother’s world and reality. She may reply: “I think they’re playing hopscotch.” Again, a question might be helpful: “Is that right….do you recall how to play hopscotch? I haven’t played in years! Want to try?” The next thing you know, you’re having a discussion about hopscotch or something else from a walk down memory lane. It’s a precious moment that would have been lost without the improv-style interaction.
When you’re interacting with someone who has advanced dementia and they may be trying to communicate something to you that doesn’t match your reality, or that doesn’t align with your recollection of an event, pause and use the “yes and…” strategy to explore your loved one’s memory. What matters most at that moment? Is it correcting the “facts” of a story, or sharing a moment of connecting emotionally and gaining a glimpse into your loved one’s reality?
If 10 people witness a crime, how many different accounts will there be? Undoubtedly, there will be 10 unique eyewitness accounts. There might be similarities between the 10 stories, but there will most definitely be distinctions between the accounts, possibly even with contradictory details.
Why is this?
Each of us has a unique experience of the world. We can’t help but view the world through our own unique lens. It also means that we interpret the world around us through that same lens, and pass judgement or draw conclusions based on our experience and our perspective.
The same is true for those who have dementia. They are viewing the world through their own unique lens and filtering it based on experience and perspective. They have a massive additional challenge because—their brain is significantly affected by a disease that interferes with how they can process information.
They cannot rely on memory to recall past experience or to logically process information. For example, if someone with dementia sees a blue towel crumpled on the floor, they could ask if it’s a dolphin. At that moment, their brain did not process that dolphins can only survive in water and they do not live in people’s homes. Their brain is unable to recall past information about dolphins or access memory to know that their home does not have any pets. At that moment, they see something that looks like it could be a dolphin and their brain interprets that data to conclude that must be what they are seeing since there is no other information to explain it.
Another example is, if an elderly woman with advanced dementia says she needs to pick her children up from school, she sincerely believes this to be the case. She is not aware that she is 86 years old and has not had school-age children in over 50 years. She is not aware that you are her daughter and you are the schoolgirl she is concerned about. At that moment, her brain is accessing long-term memory for information that has changed drastically over the years, but she is unable to recall more recent memory that would put her long-term memory in context.
Her reality is that she has school children to pick up and she cannot leave them alone. She is an attentive mother and needs to get to her children. Your reality is that your 86-year old mother is determined to pick up a school child, and you have not been that school child in nearly 50 years. In fact, you have grandchildren now who are starting in school.
Your realities are different in that moment. While your reality may be more factually correct, it is nearly impossible to have someone with dementia adjust their reality to match yours. It is far more effective to understand their reality and match them in theirs. Focusing on facts is rarely useful. Focusing on emotions is the most effective way to handle differing realities.
Focusing on facts would be reorienting your mother to your reality: “No Mom, you don’ have to pick children up from school. I’m your daughter and I haven’t gone to school in nearly 50 years; even your grandchildren have finished school. You’ve got great-grand-children starting in school now. You don’t need to pick up anyone. You’re staying here with me.”
The comments are all factually correct, but they are not helpful to the person with dementia. The pieces don’t fit together; she is unable to access the memory and process that would allow all the information to make sense. Instead, try to join her in her world.
“Oh, you have children! Tell me about your children.” Get your mother talking to understand her mindset. An emotion will likely surface, and you’re looking to understand what her emotional state is in the moment and ideally address her emotional concern.
You’re matching your mother’s reality and joining her in her world for a few moments, rather than trying to force her to join you in your version of reality. Keep the conversation going and create that emotional connection.
Don’t fight different versions of reality; learn to join your loved one in their version of reality by focusing less upon the facts, and more upon the emotions.
Dementia and Communication: What to Expect in the Late Stages
Tuesday, July 2, 2019
In the late stages of dementia, or in severe Alzheimer’s, communication is significantly impacted. By this stage, both speech and language can be affected. The person with advanced dementia is not aware of their communication deficits; they may not be able to think beyond their own needs to notice the perception challenges of the family caregiver with whom they are communicating.
Understanding the limitations of late-stage dementia is critical to communication. Knowing the challenges that will exist and the ability level of your loved one makes all the difference for successful communication.
Here are 7 elements of communication that will have become difficult, directly impacting the expectations we should set for late-stage dementia communication:
1. Highly Variable
Your loved one is going to fluctuate in ability level—by the day, by the hour, even within a minute. Just because a person with dementia can clearly articulate a concept one minute, does not mean that she is able to do so the next minute. There can be islands of fluent and coherent language where she can express herself with impressive clarity. Understand that her ability to express herself will fluctuate drastically, and a moment of inability is not laziness or faking, or manipulation.
Perseveration is a focus or preoccupation with a particular concept. It is often expressed as worry or concern. In the later stages of dementia, perseveration is quite common and is often expressed through repeated questions or a repeated focus on certain words/topics.
3. Reduced Vocabulary
The mental dictionary of vocabulary is not only shuffled as it is in the early stages, but there are also now entire sections of the dictionary that are missing. Vocabulary may be reduced to simple words, or your loved one may surprise you with complex words in one moment and lack of simple words the next moment.
4. Unrelated Utterances
Late-stage dementia causes disorganized thinking, resulting in a conversation that jumps around frequently. Where there might be some linkage between concepts in the mid-stages, in the late stages, words or ideas may be expressed that are entirely unrelated. The reduced vocabulary causes your loved one to grasp at other, unrelated words to fill the gap.
5. Word order and Agreement
One of the hallmarks of language is the correct arrangement of words—words need to be used in the correct order and in agreement with each other. In the later stages of dementia, words become easily entangled, sentences are mixed up, and correct grammar may be lost.
6. Speech Disturbances
Throughout the earlier stages of dementia or milder Alzheimer’s, language is affected. In the late stages of dementia, speech may also be affected. Someone may have trouble pronouncing words, forget how to pronounce certain syllables, or begin to stutter. In the very late stages, speech may be significantly impacted so that words are no longer discernable.
7. Non-Verbal Cues Paramount
When your loved one can no longer understand the meaning of the words you are saying, he/she will rely upon understanding your intonation, your body language, the tone of your voice, and your approach.
Your words could be pleasant and clear, but if you appear to be upset or hurried, your words will be lost. Only your upset nature or hurried and flustered sense is being conveyed to your loved one. The person with dementia may then respond to your perceived emotion, completely separate from the words that you are saying.
As someone with dementia progresses through the illness, their ability to analyze their own communication dwindles. By the late stages, they are not able to self-assess their communication at all.
As a family caregiver communicating with your loved one, or as a health care professional communicating with clients, it is our responsibility to anticipate the above 7 challenges and accommodate accordingly.
When someone is in the early stages of dementia, they are aware that they’re having trouble communicating. They know that they can’t find the words to use and they perceive others’ confusion. Their ability to talk remains strong, but their language is beginning to be affected.
It is important that we understand and know how to communicate with seniors experiencing dementia because they are still members of our society. If you are communicating with someone who is in the early stages of dementia, or someone who has mild Alzheimer’s, be sure you’re aware of these items:
Nouns are the first words to escape with dementia. Nouns are specific—people, places, things—and when you attempt to find a specific noun, it evaporates. Someone with dementia may have trouble naming specific items, even everyday items. Instead of naming exactly what or who they are talking about, they will talk around the item/person, describing it in detail until someone else can guess the correct word.
Verbs, adjectives, and adverbs remain strong, and the description can become quite vivid. The person with dementia is searching through their mental dictionary of words and cannot locate the exact word they are looking for, but they are in the right area—they’re in the right arena, the right section, the right row, but they’re not in the right seat.
The person with dementia is not playing guessing games with you! His/her vocabulary with descriptive words is so strong, you might assume that he/she must remember such basic nouns, but that is not the case. Understand that naming items, people, and places will be the most challenging words to locate.
Clichés and stereotypes become very useful to people with dementia. They can rely on a safe conversation that is predictable by using memorized responses. Social pleasantries are usually dependent on clichés, and continuing to use those clichés allows someone with dementia to maintain social appearances. When we say that someone “presents well socially” that often translates to “they use socially acceptable clichés in polite conversation”. As dementia progresses, people will increasingly rely on clichés when they’re in social settings.
3. Comprehension Challenges
Comprehension will become increasingly literal. It will be difficult for someone with dementia to understand sarcasm and other forms of humour. Analogies or metaphors are difficult to discern, and abstract expressions no longer make sense. In the middle of a conversation, you express “don’t throw the baby out with the bathwater.” Someone in the early stages of dementia may be confused and wondering how the conversation switched to bathing a baby. Abstract expressions begin to lose their meanings and are interpreted literally.
4. Redundancy Helpful
It is helpful to build redundancy into your conversation as a means of continually reaffirming the context of the conversation. Pronouns can be difficult to follow (he, she, they, etc.); naming the person about whom you are speaking ensures that the person with dementia can follow the conversation. It can be helpful to build other redundancies into the conversation as well.
A sentence such as: “Susan called last night, she’s coming to visit and bringing Evan,” could easily cause confusion for someone with dementia. Re-wording that concept into a series of simple sentences, with built-in redundancies makes the meaning much clearer: “Susan, your sister called last night. Susan is coming to visit. Susan is bringing Evan, her grandson, with her.”
As we practice these 4 points of awareness, we are including our seniors into meaningful discussions! Don’t forget that our seniors are active members of society.
What is the greatest challenge for a family caregiver of someone with dementia? Likely, the number one challenge is communication.
Why is communication so difficult?
The person with dementia is still able to speak—in some cases, the person with dementia may talk incessantly. His or her ability to speak is not affected. Uttering sounds, pronouncing words, even using complex vocabulary is still quite possible, and yet, communication is an enormous challenge.
When someone has dementia, speech is not hampered, but language is affected. What is the difference between speech and language? Speech is the physical ability to produce meaningful sounds. It is the complex interaction of muscles and nerve endings all interacting together to produce sound.
Language is not about the sounds being produced; language is the meaning behind the words. In any language, there is a set of rules about how to use words: grammar dictates that words must agree with each other, syntax ensures meaningful placement of words into sentences, semantics is a mental dictionary of words that have meaning to us.
When someone has dementia, their language can be affected. Their dictionary of words may become scrambled and finding the right word is impossible. When the correct word cannot be found, people with dementia often substitute the next available word…but because the dictionary is so scrambled, the next available word may not be related at all to the word for which they are searching. Interpreting the conversation can become difficult!
Language and the words associated with it are not the only element of communication that is affected for people with dementia. Communication relies on extensive non-verbal cues as well, such as posture, body language, facial expression, etc. Understanding and interpreting all of these signals can be difficult for someone with dementia, and their ability will fluctuate over time.
The person with dementia or Alzheimer’s is communicating in the only way that he/she is able to, at that moment. Throughout the various stages of dementia, there are different strategies that can improve communication between family caregivers and those with dementia.
Inclusion is a hot topic and a very important one for our elderly population. It emphasizes the importance of inviting the active participation of all citizens, including our elderly population, into our social fabric.
The Canadian Network for the Prevention of Elder Abuse (CNPEA) has reported that:
Being socially isolated is a common affliction among older adults. More than 30% of Canadian seniors are at risk of becoming socially isolated.
Isolation and loneliness are as bad for your health as smoking 15 cigarettes a day.
And, social isolation can put seniors at increased risk for elder abuse.
Inviting the elderly population into social spaces is the first step, the second next step is creating an age-friendly community.
What exactly is an age-friendly community?
Being age-friendly means that there are no barriers to accessing services in the community, regardless of age or ability. A city that is designed to include and be accessible for its elderly residents is automatically factoring in the needs of its younger population.
For example, if a community is accessible for someone using a walker or wheelchair, it is also accessible to a parent pushing a stroller. The examples that we think of quickly are usually about physical accommodation such as ramps, wider doorways, longer crosswalk signals, etc. These accessibility features are certainly important, but a truly age-friendly community is about far more than just physical accessibility.
Dr. John Lewis, professor at the University of Waterloo, points out that currently, one-quarter of Waterloo Region’s population is age 55 plus. That number is only going to increase in the next few decades. It is not acceptable that there are ageist prejudices towards 1/4 of our population! If we want to have a community that is inclusive to all members, it needs to be designed to suit those who are age 55 and older.
Age-friendly communities are about inclusion and a sense of belonging. It is about receiving the respect and dignity that all citizens deserve, regardless of ability or age.
Often, these issues relate directly to coping with ageism. Ageism is the stereotyping of and prejudices against someone because of their age. It might include automatically treating someone in a certain way, just because they appear to be a senior.
For example, assuming someone is hard of hearing because they have gray hair is an ageist stereotype. Another example is the way that professionals often speak about a senior to their family members, as though the senior is not even in the room! The conversation should be directed to the relevant person, regardless of age.
In addition to physical challenges, some people experience cognitive changes. These people deserve the same level of respect and inclusion as all other members of society. Brenda Hounam, dementia advocate and spokesperson, highly advises communicating about dementia itself. Rather than hiding her challenges with dementia, she has decided to be very public and make others aware of her disease.
Hounam suggests that people “open the doors for communication—just ask”. She feels that it is much better to ask for clarification and to communicate clearly with someone who has dementia; do not just make assumptions. She asks that people do more than just listen; she wants people to truly hear and validate what she is saying. Hounam’s overarching message is that “we are all unique, and we all have something to contribute until the last breath.”
Being inclusive and respectful of all citizens—regardless of age, ability, or illness—better allows us to fully acknowledge and appreciate the contributions of all members of society.
Mealtimes don't have to be difficult - We can help!
Wednesday, January 9, 2019
For many of your residents, meals are the favourite times of the day. They line up in the dining room half an hour early in great anticipation. It is the event to savour!
Other residents may struggle with meal time. Some require physical assistance with feeding, and some may need constant cueing and reminders to eat their meal. For those with advanced dementia, the noise and commotion of the dining room can trigger agitation and make mealtime less successful. There are so many different needs to meet at every meal and it can be tricky for dietary staff to meet all those needs simultaneously.
Some residents may benefit from their own dedicated caregiver during mealtime.
Residents such as Lucy, who often became so agitated at meal times that she wouldn’t eat anything at all. At a quick glance, it appeared that Lucy just wasn’t hungry for her dinner. But when we sat with Lucy through her meals, we discovered that much of the time, she was confused and wasn’t sure what to eat or how. It was not because she was not hungry.
When we provided Lucy with a dedicated caregiver who sat with her throughout dinner, Lucy suddenly began to thrive! The caregiver would cue Lucy saying “oh, that roast beef looks delicious, would you like a bite?” and Lucy would smile and take a bite.
A minute later, the caregiver would say “you’re a big fan of mashed potatoes, and look what we have here—your favourite! Mashed potatoes!” By the end of the dinner hour, Lucy had cleaned her entire plate. With cueing, direction and constant encouragement, Lucy ate her food and was mostly able to feed herself. By continuing to cue Lucy and not just take over by feeding her, her own dedicated caregiver promoted Lucy’s remaining abilities and independence.
Do you have any residents who would benefit from patient, one-on-one constant cueing and encouragement? Watch your residents thrive when paired with a Warm Embrace caregiver!
Someone who is experiencing dementia may exhibit behaviours that we do not understand. These behaviours have been labeled ‘difficult’ or ‘disruptive’ or ‘challenging’, but is that really a fair assessment of these behaviours?
In caring for people with dementia, the focus often ends up being on the disease itself, rather than on the person who is experiencing the disease. Thus, their behaviours are often automatically assumed to be associated with the disease.
Sharon Stap, a Psychogeriatric Resource Consultant, contrasts older understandings of dementia with more updated approaches. In the past, it was understood that dementia was altering someone’s brain, resulting in different behaviour. All behaviour was assumed to be a result of the disease.
The newer understanding of dementia is that the changes in someone’s brain results in a different perception of the world around them, creating anxiety, fear and other emotions which then lead to different behaviours. Understanding that someone with dementia is experiencing a change in perception which causes behaviour should fundamentally alter how we interact with those who have dementia.
Dr. Sherry Dupuis, former director of MAREP (the Murray Alzheimer Research Education Project), feels that we need to reframe our view of these behaviours. Instead of merely seeing the ‘challenge’ or ‘difficulty’ that these behaviours cause for us, or assuming that all behaviour is attributed to disease, we need to reframe these behaviours as a form of communication. Dr. Dupuis views behaviours as a form of personal expression, a unique way of communicating needs. We should then seek to understand the meaning behind the personal expression.
We must remember that people who have dementia were all unique individuals prior to the onset of their illness. They continue to be unique individuals with different personalities, communication styles, interests, life histories, etc. Dr. Dupuis charges us to never lose sight of the fact that a person with dementia is first and foremost a person who requires love, care, and understanding, not just a disease or a ‘case’ that needs to be managed.
One of the greatest gifts that we can offer to someone with dementia is the gift of truly relating to that person—validating their personal experiences and feelings. Someone with dementia is experiencing the world around them differently than they previously experienced the world, and differently than you might be experiencing the world around you.
This experience may be frightening, overwhelming, or worrisome, and the feelings that are generated and their emotional response is fully valid. We cannot be dismissive of someone’s feelings or emotional responses just because we do not deem a situation to be frightening to ourselves. The kindest thing we can do is try to understand the emotional response and validate the feelings that someone else is experiencing. Only then can we attempt to change someone’s experience into something more positive.
If someone is distressed or having a negative experience, distraction can be helpful, but it is not the first step in the process. Stap emphasizes that you cannot jump immediately to distraction, otherwise you risk being dismissive of someone’s feelings. Stap proposes a four-step process where distraction is the final step, not the first option.
The Four Steps:
1. Show you care
2. Show you want to help
For example, Agnes has dementia, and she is upset and focused on wanting to return home. The first step is to acknowledge how Agnes is feeling. You might say: “You need to get home, Agnes? I can understand why you’re so upset.” Attempting to inform Agnes that she is already at home—known as reality orientation—is not helpful and only causes more distress; Dupuis and Stap agree that there is rarely, if ever, a good time for reality orientation.
After acknowledging and validating Agnes’ feelings, you want to show that you want to help. You might suggest: “let’s go see if we can find someone who can help us, Agnes”. While on the hunt for someone who can help, you have the opportunity to redirect, the third step. You could say, “I’m tired. Before we look for someone else who can help, do you mind if we rest here by the piano?”. After this, you have the opportunity for distraction, the fourth step. You could then say: “You play the piano, don’t you, Agnes? Would you play me a tune?”
If you had jumped immediately to distraction via the piano when Agnes first approached you, she likely would have felt even more frustrated that her needs were not being addressed. Acknowledging Agnes’ feelings and needs, then assisting her to focus on something that is more comforting, allows for a positive experience overall.
Interpreting all behaviour as a form of personal expression shifts the focus off of the disease of dementia, and refocuses attention on the individual person. Suddenly, behaviours are imbued with meaning and purpose, a form of communication. It is then our responsibility to enable the best possible form of communication and understanding, setting people up for success, regardless of dementia or other illnesses.