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8 Steps to Overcome Refusal of Care


INTRODUCTION

8 Steps to Overcome Refusal of Care It should be simple: Your loved one with dementia needs help with daily selfcare activities, so you hire someone to provide it. But nothing about dementia is simple. When your loved one refuses the care they need, it can be frustrating and even dangerous. At Tender Rose, we’ve learned a tremendous amount about how to overcome that resistance and are offering this guide to help you navigate this process. Our approach begins with understanding the difference between denial and anosognosia. Denial is a strategy used to reject something that’s too difficult to acknowledge. Anosognosia refers to brain cell changes that lead to a lack of selfawareness. In other words, the person is unaware of the existence of his or her condition. Since 80% of people with dementia also have anosognosia, it’s probable that your loved one isn’t in denial at all — he or she is simply showing good sense: Why would they allow a stranger into their home for care they don’t need and then have to pay for it? Our 8 Steps to Overcome Refusal of Care has helped countless clients over the years accept the care they truly need. We hope this eBook provides you with useful tactics and peace of mind — and that together we can make every day a good day for you and your loved one with dementia.


A great dementia caregiver will proactively find ways to engage the client in meaningful activities in order to avoid agitation triggers.


STEP ONE

Choose the Right Caregiver The first — and possibly most important — step to helping someone with dementia accept care is to choose the right caregiver. Most people with dementia aren’t able to acknowledge that they need help with daily self-care activities, so finding a caregiver with both training and experience in dementia care is crucial. Traditional home care agencies focus on reacting to physical needs and completing tasks, whereas person-centered activities that bring joy and meaning are at the heart of best practice dementia care. You’ll want to find a caregiver who is a companion and someone with whom the person with dementia enjoys spending time. Similar to dating, chemistry is key here! From physical attributes (piercings, stature, hairstyle) to disposition (outgoing, soft-spoken, funny, nurturing), choosing a caregiver who has the best chance of making a great impression and maintaining a connection with the client is vital. In addition to personality and appearance, it’s essential to understand how the caregiver views their job. A great dementia caregiver will proactively find ways to engage the client in meaningful activities in order to avoid agitation triggers (versus sitting around waiting to respond to physical needs). There are several checklists of things to look for when you’re evaluating caregivers for your client or loved one with dementia; we typically recommend this one to families on this journey. The more time you invest in finding the right caregiver upfront, the more likely you are to find the right long-term match.

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STEP TWO

Set Your Caregiver Up For Success The second step in helping someone with dementia accept care is to set your caregiver up for success. In the home care industry, it’s not uncommon for a caregiver to be handed a client’s name and address from their employer, leaving them to figure out the rest upon arrival! We know that this approach, particularly when we’re working with clients who have dementia, is usually destined to fail. What does work well is spending enough time — before the start of care — with the client and their family, gleaning insights into the client’s background, social history, preferences, and triggers. Through a series of assessments and conversations, we can assemble a care plan that outlines the daily routine, personal care needs, and any cognitive or social issues that will impact how we approach each day. The caregiver also needs to know about the client’s personal history, so she can engage the client in conversations and activities that help create the bond between the client and caregiver. Having information about which foods might redirect the client away from a challenging moment, or which Frank Sinatra song will help turn their mood around, help us elevate the quality of care for our clients. At Tender Rose, in addition to conducting an in-home assessment with the client (often with key relatives or friends present), we have our clients’ family caregivers complete a series of online assessments covering behaviors, personal care needs and an extensive social history. The life story questionnaire from the folks over at CPI is a good example of this type of assessment. This information is critical in establishing a good understanding of the person for whom we’re providing care and setting the caregiver up for success.

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The caregiver also needs to know about the client’s personal history, so she can engage the client in conversations and activities that help create the bond between the client and caregiver.


Once the caregiver has been welcomed into the client’s home, we use our knowledge of their personal life to start conversations about topics we know they enjoy.


STEP THREE

Make the Caregiver Not a Stranger The third step in helping someone with dementia accept care is to make the caregiver not a stranger. Nobody wants a stranger in their house, and clients who have dementia and anosognosia will almost always reject help from a new caregiver (after all, if the client doesn’t think they need help, why would they readily accept it in their home?). What does work is being creative with how we introduce the caregiver. Often times, low-risk, low-commitment situations will help the caregiver get their foot in the door. If the client will accept help with pet care or laundry to start, let’s begin with that! We can usually build on smaller tasks with larger aspects of care, but we need a solid starting point which will help the caregiver begin to develop rapport and establish trust. Similar to most aspects of dementia care, our approach here will be individualized based upon what we know about the client. If the client has a chronic medical condition (aside from dementia) that they’re aware of, we might introduce the caregiver as a medical assistant sent by the doctor to check in on them. Once the caregiver has been welcomed into the client’s home, we use our knowledge of their personal life to start conversations about topics we know they enjoy. Each subsequent visit can be extended slightly if the caregiver can keep the conversation going in a positive manner. The relationship grows from there!

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STEP FOUR

Start with one thing and get incremental commitment This is an incredibly powerful technique. The idea is to start with one thing that the client will accept help with, and then build from there to get them to accept more help over time. We’ve had clients where we started with several brief visits per week, gradually extended those visits over time and within a few months, we were able to smoothly transition to a full-time care schedule. Let’s take for example our client, Earl, who had a dog whom he loved dearly but knew he wasn’t able to care for on his own. Earl’s daughter told him that Monica (his new caregiver) would stop by two times each day to walk and feed the dog. While she was there, she engaged Earl in conversations he enjoyed, about his work history, his interest in the 49ers, San Francisco politics, and other subjects. After a few visits, Earl would accept Monica’s invitation to go with her to the store or take a trip to the park for a walk, or to let her cook dinner for both of them. Over the course of three months, Earl went from accepting two 30-minute shifts per day focused entirely on his dog’s care to five 8-hour shifts each week to help him with house cleaning, shopping, cooking, medication reminders, exercise, and more. So far in this series, we’ve covered finding the right caregiver and setting them up for success, to making the caregiver not a stranger and gaining incremental commitment with the client. In Step 5, we’ll discuss how to get comfortable with therapeutic storytelling as a way to help someone with dementia get the care they truly need.

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The idea is to start with one thing that the client will accept help with, and then build from there to get them to accept more help over time.


When someone isn’t able to make good judgements or understand their own needs, telling them the real reason we’re there will likely only trigger agitation and create a setback in initiating care.


STEP FIVE

Get comfortable with therapeutic storytelling Most of us are taught growing up that you should not lie, particularly to your parent or spouse. The big difference here is that usually when people lie, they are lying to protect themselves. With therapeutic storytelling, you’re lying to protect your client or loved one from their own poor decisions and dangerous behaviors caused by their dementia. When we’re trying to initiate care, coming up with plausible reasons as to why we’re coming into someone’s home is critical to our success. Using explanations such as, “Your doctor asked that we stop by to take your blood pressure twice each day.” or “You had asked for some help with housekeeping and garden maintenance.” will usually produce a more favorable response than the absolute truth for our presence in the home. When someone isn’t able to make good judgements or understand their own needs, telling them the real reason we’re there will likely only trigger agitation and create a setback in initiating care. Therapeutic storytelling works in situations where validating feelings, trying to reason and turning to logic all fail. In our next step, we’ll learn how to use therapeutic storytelling to overcome a common objection to accepting care: paying for services.

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STEP SIX

Take money out of the equation Your client or loved one with dementia will likely not pay for a service they think they don’t need. The easiest way to deal with this problem is to use therapeutic storytelling. We’ve had clients who have flatly refused to initiate service due to cost alone. By telling them the service is covered by Medicare, we were able to overcome the cost objection so that we could start building a relationship with them. We’ve also successfully introduced care with clients when we’ve told them that our Memory Care Professional (caregiver) was a nursing student required to spend a certain number of volunteer hours helping a senior in their community. Her help costs nothing and the client feels that they are actually doing the caregiver a favor. Again, with therapeutic storytelling, you’re telling a small fiblet to protect your client or loved one from their own poor decisions and dangerous behaviors caused by their dementia. Our next step in this series will focus on prioritizing issues that need to be addressed with the person who has dementia and tackling just one problem at a time.

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By telling them the service is covered by Medicare, we were able to overcome the cost objection so that we could start building a relationship with them.


The caregiver needs to be seen as a friend and ally, not the nagging enforcer.


STEP SEVEN

Tackle One Problem at a Time Your client or loved one with dementia will have a number of issues that need to be addressed when care is initiated. Problems will have arisen, and things will have been neglected, but every issue cannot be solved overnight. The problems need to be prioritized and solved one at a time. The highest priority is for the caregiver to establish rapport and develop a relationship with the client — without a bond, we’ll have less success managing other aspects of the person’s overall care. The caregiver needs to be seen as a friend and ally, not the nagging enforcer. If the caregiver pushes to solve too many problems too early, it can sabotage the long-term relationship. With one of our clients, we uncovered a host of problems that needed to be addressed, but the most important was finding the right caregiver for him so that they could establish rapport. From there, we were able to work with his doctor to get his medications under control. Then, we tackled his diabetes by replacing high sugar drinks with healthier options. Gradually, we were able to address each area of our client’s life that needed help. We intercepted lottery scam letters, started a regular exercise program, and established a more frequent shower schedule. This process takes time, so don’t feel discouraged if things aren’t moving as quickly as you’d hoped. Our next and final step in this series will address one of the foundations of best practice dementia care: providing activity-based, person-centered care.

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STEP EIGHT

Provide person-centered, activity-based care Congratulations — you’ve made it to the final step in our process to overcome refusal of care with someone living with dementia! Our eighth step focuses on one of the fundamentals of best practice dementia care: tapping into activities that bring your client or loved one joy and meaning. Most caregivers are task-oriented and focus on the physical needs of the client (bathing, dressing, toileting). Their focus is on the client’s disabilities and often circles around doing things for them instead of supporting them through the process. This approach is often unsuccessful because if your client or loved one doesn’t think they need help with daily tasks, they will not be receptive to caregiver attempts. It also misses a big opportunity to build a day around activities that help the client reconnect with things that have always brought them joy, whether that be baseball or ballet, sculpture or the symphony. With person-centered, activity-based care, the caregiver learns what has always brought joy and meaning to the client and then helps the client engage in those activities at whatever level they can still participate. The caregiver focuses on the client’s remaining abilities and helps them do things for themselves. This positions the care provider as a friend, ally, and companion rather than a caregiver. By engaging the client in activities that are meaningful, we can prevent their mind from going to places that cause agitation and paranoia. If you’ve made it this far, you’re well on your way to improving the quality of life for your client or loved one with dementia. Although needs will change throughout the course of one’s dementia journey, establishing a connection based on trust and understanding will give you the best foundation upon which to build as time goes by.

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By engaging the client in activities that are meaningful, we can prevent their mind from going to places that cause agitation and paranoia.


www.tenderrose.com Copyright Š 2019 Tender Rose Dementia Care Specialists

Profile for Tender Rose Dementia Care Specialists

8 Steps to Overcome Refusal of Care  

It should be simple: Your loved one with dementia needs help with daily selfcare activities, so you hire someone to provide it. But nothing...

8 Steps to Overcome Refusal of Care  

It should be simple: Your loved one with dementia needs help with daily selfcare activities, so you hire someone to provide it. But nothing...

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