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Exploring Responsive Behaviours

 

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

 

3. Redirect

 

4. Distract

 

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.

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Top 5 Reasons Families Need a Caregiver for Parents in LTC

 

You can imagine that someone living in a nursing home wants a regular visitor, but can you think of reasons why their families also benefit?

 

Here are top 5 reasons that families need a caregiver for their parent in long-term care:

 

1. To Supplement Family Visits

You know how important it is for your father to have a regular visitor, but you just can’t keep doing it all yourself.  You can’t manage your own household and your career while also being at the long-term care home daily.  He thrives with one-on-one support, but it can’t be you every day.

 

 

Warm Embrace caregivers supplement family visits.  We never replace family, but we can provide support when a family cannot be present. We ensure that your loved one has a wonderful day and is in better spirits so you don’t feel guilty about not visiting.

 

2. Family dynamics

Let’s be honest—your family wasn’t exactly the Brady Bunch (don’t worry, neither was mine!).  Deep down, you love your parents and your siblings, but loving someone doesn’t mean you get along well! Decades of history aren't erased just because parents become elderly and require more care.  Sometimes, those long-standing family issues become even more emphasized when the patriarch or matriarch becomes ill.

 

You want the best for your parent, and you believe regular visits would benefit your father.  Truth be told, you’re not the best person to be doing the visiting.  It may not be the most beneficial for your father, and it definitely won’t be good for you.  The kindest thing you can do is provide a visitor who can appreciate your father unconditionally—no strings attached, no history, no family dynamics.

 

3. Families Spread out Geographically

Today’s families are spread across the country and even across the globe!  It is not uncommon to have siblings living in different time zones and various countries.  With families at a distance, it can be difficult to visit your parent in a nursing home regularly.  A local caregiver can provide the tender, loving care that you wish you could provide, if only you lived closer.

 

 

Maybe your siblings visit often and you feel bad that you’re not able to contribute.  You can send a substitute on your behalf! Of course, we can’t fill your shoes, but we can provide a visit that alleviates your siblings from feeling like everything has been left up to them.

 

4. Interrupting Patterns

This fits closely with family dynamics, but it is slightly different.  Family dynamics are what happens between people; interrupting patterns has more to do with your parent’s personal pattern.  Your parent does not yet have a pattern with us, so we have the chance to have a completely fresh start.

 

Does your mother have a pattern of complaining every time she sees you?  We hear this all the time.  Your mother complains endlessly to you, but the nurses tell you that she is a sweetheart to deal with. How is it that she can seem like two different people?  Your mother may have an ingrained pattern; when she is with you, she complains about anything and everything.

 

We can’t promise to change your mother’s pattern. What we can do is interrupt that pattern by starting from scratch. Our visits can remain focused on the positive which will keep her in better spirits and prevent you from feeling frustrated over constantly negative visits.

 

5. Extended family

Your great-aunt listed you as her Power of Attorney and she’s now been moved into a long-term care home.  You visit when you can, but all she talks about is how lonely she is and how she wishes you would visit every day.  Your own family and career already keep you busy and now your own parents are starting to need some assistance. . . there’s just no way you can visit your great-aunt as regularly as she’d like.

 

 

Having a caregiver visit regularly is the perfect solution for those who do not have a close family.  We become their proxy family members.  We can visit daily and provide the companionship and stimulation that they are seeking—while alleviating you of the guilt that you can’t visit more often.

 

Remember—the caregiver who is visiting your parent may be enlisted as much for your sake as for your parent’s sake, and that is perfectly okay. We would be honoured to visit your loved one in Long-term Care!

 

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Why are there Private Caregivers in Nursing Homes?

 

People are often shocked to realize that Warm Embrace provides service within long-term care homes (previously known as nursing homes).  We have numerous clients who live in long-term care homes all across the region—in Kitchener, Waterloo, Cambridge, Guelph, Elmira, even all the way out to Palmerston!

 

If people move into nursing homes to have everything taken care of, then why do they need a Warm Embrace Caregiver?

 

One-on-one undivided attention

 

You might think “there are tons of staff at the nursing home, why would we bring in another caregiver?”  You’re absolutely right—there are many staff within long-term care.  There are nurses and PSWs, housekeeping staff and maintenance staff, administrative staff and social workers—the list goes on and on!  Sure there are many people buzzing around, but none of them are there exclusively for your parent.

 

 

People know when a visitor is there just for them, versus someone who is there for the whole group.  Staff must pay attention to all the residents; even hired entertainers must try to engage the whole audience.  The residents inherently know that those visitors are for everyone. It is no different than attending an event at Centre in the Square—the performance isn’t for you personally, it is for the whole audience.

 

A personal, private caregiver, by contrast, is there for your parent exclusively. They are not rushing out of the room to assist anyone else; they are not turning away from your parent to converse with someone else.  They are there to provide undivided, one-on-one attention. It is amazing to see how people KNOW the difference.  Someone with advanced dementia who can no longer speak will absolutely light up when her caregiver arrives—she knows the difference between her personal caregiver and any other visitor who is there for the group.

 

Matching Individual Needs

 

Residents in long-term care centres have a huge range of needs.  Some people are there because of cognitive needs—their brain has been affected by an illness such as dementia.  Others are there due to physical needs such as incontinence or requiring a Hoyer lift for transfer.  Others may have a combination of both physical and cognitive needs such as those with Parkinson’s or stroke survivors.

 

 

The Activity Director has the very challenging job of trying to find group activities that match as many needs as possible. Naturally, the activity director has to cater to the average so that as many people as possible can participate.  However, residents on either end of the spectrum may feel left out. Those who are very sharp mentally may feel that activities are too basic or childish.  Those with advanced dementia may find activities too complicated or frustrating.

 

A caregiver matches the individual needs of the resident whom they are helping.  The activity can be scaled to suit the ability of their client so that the client never feels frustrated while also ensuring that the client is not bored or under-challenged. Maintaining just the right level of mental stimulation is a delicate balancing act—one that can be managed by a caregiver who is assigned to meet the needs of just one client at a time.

 

Managing Behaviours (expressive communication)

 

Moving into long-term care can be a frightening experience for someone with dementia. Suddenly, everything is different. Routines have changed, the environment has changed, and everything seems to be moving so quickly.  Someone with dementia may not be able to articulate how they are feeling. Instead of saying: “I feel frustrated and overwhelmed right now” they may instead act in a way that you’ve never seen before.

 

 

Their new behaviour is a form of communication.  They are trying to tell you something. . . the hard part is to figure out what they’re trying to say. Nursing home staff who are rushing from resident to resident may not have the time or undivided focus to figure out what your loved one is communicating.

 

Instead of just seeing “challenging behaviour” we see a form of communication. We consider ourselves to be detectives—we are looking for clues to decode what your parent is attempting to tell us. If we can start to pieces together the clues, we might be able to decode a legend of sorts—a legend that will help interpret future communication.

 

Nursing homes are large facilities with tons of staff coming and going. Warm Embrace Caregivers work alongside long-term care staff to provide the best possible care for your loved one! As a team, we work to ensure all your parent’s needs are being met. Long-term Care staff may focus on their immediate physical needs but our caregivers will take the extra mile to provide your loved one social and emotional support.

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