[05] Dementia Horizons: Gaining Cooperation

Dementia Horizons™ | Workshop 5 | Gaining Cooperation

Video Module [05] Transcript

Welcome. How we move, feel, and act: it begins as electrical impulses formed within our brains. Particular parts of the brain control certain functions more than others. When fully engaged, sections of the brain talk to each other, managing our other organs, allowing us to perform day-to-day activities and making us who we are. It can seem like someone is in denial, but in fact, when parts of the brain are not working as they should, asking for help or accepting medical care becomes challenging.

These functions are performed throughout the brain, but heavily rely on areas called the frontal lobes and prefrontal cortex. These sections of the brain are located behind the forehead. So, what are executive functions? They are responsible for abilities we take for granted. These include voluntary movement, expressive language, attention span, working memory, planning, self-awareness, judgment, and decision-making. These functions can become increasingly impaired as the result of structural changes in the brain tissue, due to a disease or disorder associated with the syndrome of Dementia.

For example, a person exhibiting the cluster of symptoms we call Dementia, especially with impaired executive function, may not be aware they can no longer manage their finances, follow a recipe, recall previous health problems, put clothes on in the proper order, or consciously recognize their decline. Now you can start to appreciate why, from their point of view, they may see no reason to be medically evaluated or tested: "I'm fine. I don't need to see a doctor."

Let's now focus on learning how your approach and different strategies can lessen this type of resistance. Bear in mind that you will need to shift your thinking, even though they may not think an appointment is necessary. Make one anyway. This is not deceptive, it's practical. Given the advanced planning required to get many appointments, start the process sooner rather than later. You are helping by filling in the gaps where they have cognitive deficits.

Talking about an appointment too early can cause arguments, agitation, and a flat refusal. Instead, if possible, give the person shorter notice, maybe even the day before or the morning of an appointment, to reduce a buildup of anxiety. When you do talk about the visit, be positive and matter-of-fact. Consider describing it as a routine follow-up for a previous ailment or chronic condition, an annual exam, or a need to discuss medications. You can also focus the reason on the medical provider or insurance coverage. Explain that the doctor must see you face-to-face before refilling or changing any prescriptions. You can also consider saying that you are seeking medical advice for yourself, and want them to come along for support. This is not a lie. Their health can most certainly impact yours. Most care partners want the other person to be healthy, and suggesting that you will benefit from going together may lower their defenses.

Keep your emotions in check. Commit to not arguing; it does you no good and escalates the situation. Keep your facial expressions positive. Watch your tone of voice and be soothing no matter their response. If they become upset, use empathy and acknowledge the feeling. This may sound like: "I'm so sorry that you are upset and worried. I will be with you." Sometimes you must change the subject. Get involved in some other activity for a while, and then try again a little later.

In addition to your primary care provider, there will likely be different types of appointments, perhaps a specialist, lab work, medical scans, or cognitive testing. We'll explore several scenarios, but first, it's important for privacy reasons and communication difficulties that you want to be present with your care partner throughout their visit, whenever practical. If properly arranged ahead of time, you can act on their behalf, make decisions, and receive information directly from the medical team about your loved one's diagnosis, medications, and care plan. This may require having your care partner agree while they are competent to do so, to allow information to be shared. There can be legal elements to consider, which we will address in other videos.

Now, let's look at some tips to help you prepare.

• Try to schedule an appointment in the middle of the day. Getting out the door earlier in the morning is often more challenging. If the appointment is late in the afternoon or evening, you risk both of you feeling tired, hungry, maybe even hangry.

• Also, plan to call the office ahead of time on the day of the appointment to see if they are running late.

• Do something pleasant and brief before the appointment. Stop and smell the roses. Create a fun errand. This is intended to create a positive mood.

• Pack a bag with a snack, water, medications, change of clothes and briefs if the appointment runs late.

• Bring a magazine, mobile device, photo album, or other meaningful and portable activity that you can share if the wait is longer than expected.

  
  

Thankfully, one of the best ways to start a conversation about going to the doctor is around annual wellness screenings. They have become popular and expected. They help normalize honest discussions of concerns or challenges. They enhance a physician's ability to detect early changes in our bodies. This includes the brain. After all, it's the one organ that serves all others. These routine visits can also help create personalized prevention programs or care plans.

Cognitive screenings are relatively brief and may include multiple questions, calculations, drawing a clock or various figures, remembering a short list of words or images, and identifying common objects like a banana or bicycle. If cognitive impairment is suspected, the person may be referred to a specialist for a full neuro-cognitive assessment. It is common for testing to take a few hours, and be repeated months later, to determine if there has been a change in cognition, positive or negative. There may be paper and pencil tests, computer-based exams, and physical tests like walking or touching your finger to your nose. All these activities are intended to confirm which aspects of brain function are impaired, if any, and to what extent.

Try not to over-describe the testing. Tell them that the doctor wants to check different body parts, including the head, to record your health over time. Indeed, continue to refer to additional testing as routine: "The doctor wanted them to do it just to be on the safe side." There is no need for detailed explanations.

As the appointments approach, let the person know that although they may not be fun, they will be worth it, and that you are there for them. If you've had similar experiences, you survived, and they will too.

At the appointment, privately describe any new cognitive issues that have arisen since they were last seen, so that they are not surprised at whatever happens. Smile gently, and talk compassionately to the staff about your care partner or loved one and their needs. Be aware that you may be interviewed separately, to obtain a more detailed history and to gather your observations about how thinking and behavior have changed.

Medical scans like an X-ray, MRI, CAT, PET, or SPECT may also happen at some point. Additionally, a test may be ordered that requires a bit more preparation. An example would be obtaining a small sample of cerebrospinal fluid. Finally, there might be a desire to perform genetic testing, usually a quick swab on the inside of the cheek.

These types of tests can be unnerving and filled with anxiety and fear. Some of the testing machines are imposing or have tight spaces that may be claustrophobic. Some generate loud noises too. Hopefully, medical staff will allow you to accompany your loved one to the area where clothes are changed and stored, before they get into a medical gown in the room where testing is done. Show respect and provide them the dignity they deserve, but also be willing to step in and help no matter how awkward the situation may become. You are there to help them feel more secure.

The person within your care may need additional help following directions, so reassure them that everyone is there to keep them safe from harm. You may have to step out during the operation of specific test procedures, so be prepared for anything in advance, including agitation, and ask whether your loved one can wear earplugs, an eye mask and have calming music during the procedure.

Lastly, lab appointments bring another set of complexities. Some lab tests require that the person not eat food or drink certain liquids for a period of time beforehand to obtain more accurate results. That said, if the person is having their blood drawn and drinking water ahead of time is allowed, it can make it easier for the technician to find a suitable vein. Give yourself time to prepare everything, and use the same calm matter-of-fact approach. Again, bring a snack to eat immediately after the visit or plan to enjoy a meal together afterward to avoid low blood sugar and unnecessary hunger or thirst.

In conclusion, as you navigate these appointments, remember you are learning to care for your loved one differently, and I hope you feel more equipped with practical tips intended to gain cooperation. Thank you for joining me.