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Category: Alzheimers

Making the Most of Your Healthcare Visits – Facebook Live Recap

Preparing for healthcare appointments can seem daunting for both caregivers and patients. There are questions you want to ask and updates you want to give, but you may find that preparing for an appointment is an overwhelming task.

“Sometimes we have patients or family members who don’t necessarily understand the process, and it makes them feel like they don’t get the most out of their healthcare visit,” said Program Director for the DENT Integrative Center for Memory, Sarah Harlock. “However, there are steps that patients, family members and care partners can take to get the most out of appointments.”

Booking and Scheduling

After a dementia diagnosis, it can feel like there are appointments every other week. One day you may have an appointment with your physician, the next week you may need to get additional testing or imaging done. The frequency of appointments and testing can seem overwhelming at first. However, those initial tests are an important part of confirming your diagnosis and creating an appropriate treatment plan.

“Once a treatment plan has been made appointments will become less frequent. Some patients come once every three months, others every six. Depending upon your diagnosis and your needs, you and your physician will create an appointment schedule that works for you,” said Harlock.

Appointment Preparation

Reminders

The way patients diagnosed with memory disorders respond to appointment reminders is very individualized. Some patients enjoy keeping track of their appointments and want to be reminded in advance. Other patients may become very anxious or nervous when reminded. If as a care partner you notice that the person you’re caring for has increased anxiety leading up to an appointment, it’s okay to be sparing with reminders.

Time of day

Caregivers, try to schedule appointments that are at the patient’s best time of day.

“If person the person in your care is generally more confused and agitated in the afternoons, schedule a morning appointment,” said Harlock. “At appointments we will do in-office assessments and we want patients to feel relaxed and able to perform at their best.”

Allot enough time to get ready

“It is important that a patient is fully prepared for their appointment, so try to be mindful of that when scheduling,” said Harlock. “As a caregiver, if you know your loved takes 2 hours to get ready in the morning, maybe an 8 am appointment doesn’t make sense.”

“At each appointment, we want to make sure the patient is in the best frame of mind. Rushing them out the door to the appointment, creating stress is not a good way to achieve that optimal frame of mind,” added Harlock.

Caregivers, it is also important to be mindful of how much help your loved one needs. Is a telephone reminder enough, or has it become necessary to have someone helping them get ready for the appointment?

Preparing for the Healthcare Visit

There are many things you can do as a care partner to make the most of your loved ones healthcare visit.

Make sure the patient has their glasses, hearing aid, etc.,

“One major part of being prepared is making sure the patient has remembered their glasses or hearing aid, or anything vital to their communication. It is very difficult to assess patient if we cannot properly communicate with them,” said Harlock.

Bring an updated list of current medication

Another important piece of being prepared is having a current medication list. This list should include over the counter medicine and supplements. “

This is important, so that we know exactly what the patient is taking,” added Harlock. “The other piece to this is that caregivers are knowledgeable about how well the patient is taking their medication and there are ways to be respectful about this.”

One way you can respectfully check in with your loved one to measure how well they are taking their medicine is to say something along the lines of I’m sure you’re doing this right but just so I can answer the doctor, I need to know you are taking your mediation the way it is prescribed.’

“We have seen many patients whose family member thought they were taking their medication properly, then something happens as a result, and they realize they weren’t.” said Harlock.

Document any changes since last visit

The day before the appointment take a few moments to think about or write down the changes that have happened since the last visit. 

Documenting changes in a patient’s willingness to take shower, ability to handle finances or take medication, is vital information for a provider to be continually updated on.

“Mood is also an important thing to be taking notice of. If there is a big change in mood we would like to know about that,” added Harlock. “Additionally, if there is something you cannot say, or don’t feel comfortable saying in front of the patient, write us a note. Slip the note to the medical assistant or nurse and they will get the questions to the provider who will then make sure it is addressed during the visit.”

At the Appointment

Have your list of questions ready

It is easy to be distracted by rushing to the appointment, or hearing something the provider said. This list will help you focus and on the appointment and get your questions answered.

“Be knowledgeable and honest about what the patient is capable of. If you are the caregiver for a loved on it can be difficult to share, however it is important to be honest and accurate,” added Harlock.  

Take notes during the appointment so you can be mindful of what to keep an eye out for and what to mention in your next appointment.

“It is also helpful for caregivers to ask if there are any red flags to be watching for, especially with medication changes.”

Additional Tips

For caregivers

Caregivers, you are part of the healthcare team! Your insight is vital in maintaining and adjusting treatment plans.

In addition, please do not wait for the next appointment to tell us about a medication side effect, or that the patient is struggling with or has stopped taking a medication,” added Harlock.

For patients

Consider bringing someone to your appointment with you who knows you. Due to the changes that are happening in your brain, even at an early stage, your perspective may not be the same as your families or friend’s. You may not be an accurately communicating or understanding what your treating provider is saying. This is not meant to be an insult, but the reality of the a cognitive impairment diagnosis.

View the entire presentation below!

The content of this post is intended for general educational and informational purposes only; it does not constitute medical advice.  Readers should always consult with a licensed healthcare professional for diagnosis and treatment.

 

5 Steps to Take After a Memory Disorder Diagnosis

A memory disorder diagnosis can seem overwhelming and intimidating. Whether you are living with a diagnosis, or caring for someone with a memory disorder, there are many variables to consider when planning for the future. 

Sarah Harlock, Program Director for the DENT Integrative Center for Memory, shared five important initials steps to take after receiving a memory disorder diagnosis. 

  1. Gather important documentation.

    • Power of Attorney

    • Health Care Proxy or MOLST (Medical Orders for Life Sustaining Treatment)

    • Veterans Discharge papers etc.,

  2. Get some information about the diagnosis. You do not need to learn everything about the illness but have a sense of the types of challenges you may be faced with.

  3. Learn more about supportive services that are available such as community based programs, health services, and levels of care. Gather information to determine costs and how one enrolls in these services. 

  4. Make a plan (nothing is written in stone,) just create an outline of services you think you might like to try when necessary.

  5. Breathe! You have to learn to live with this diagnosis, and there is a lot of living still to do

While there are many other steps to take and adjustments you may need to consider, completing these initial steps will help you and your care partner begin planning for challenges that may arise in the future. 

For more details about programs and services, questions about making a plan, or more information about cognitive changes, please contact Sarah Harlock, Program Director for the DENT Integrative Center for Memory, at 716-250-2000, ext. 1107. 

The content of this post is intended for general educational and informational purposes only; it does not constitute medical advice.  Readers should always consult with a licensed healthcare professional for diagnosis and treatment.

Dementia and Communication – Facebook Live Recap

Dementia is an umbrella term used to describe a group of symptoms. Those symptoms can arise as any negative change related to thinking, including; difficulty with memory, language, reasoning or problem solving. Those symptoms, commonly referred to as cognitive changes, may affect the way a person communicates. 

Program Director for the DENT Integrative Center for Memory, Sarah Harlock, explained over Facebook Live why these communication breakdowns happen and techniques you can use to improve communication between you and the person in your care. 

Importance of Communication:

It is important to note that there are many types of dementia, including but not limited to; Alzheimer’s disease, Lewy Body dementia, and Frontotemporal dementia. That being said, it is important to understand that communicating with someone with Alzheimer’s disease may be different than communicating with someone with frontotemporal or vascular dementia. Approaches in communication may need to vary from person to person, dementia diagnosis to dementia diagnosis.  

“It’s helpful to think of dementia communication as a continuum. The person you’re caring for with Alzheimer’s may not be able to communicate the same way as the person sitting next to them who also has Alzheimer’s,” said Sarah Harlock, program director for the DENT Integrative Center for Memory.

“Communication, at its core, is about connecting with another person,” said Harlock. “Although, sometimes communication may be about giving an instruction or direction, try to remember that communication is about making emotional connections and that is what the person with dementia is trying to do.”

In the later stages, dementia can be accompanied by changes that may impact a person’s ability to communicate. 

 

Vision Changes:

Vision changes are a large part of a late stage dementia diagnosis. A person with late stage dementia may experience significantly diminished peripheral vision.

“For example, if you put a cup of coffee on the side of their place-mat and they keep asking ‘where’s my coffee,’ you, as a care partner may be frustrated and keep saying ‘it’s right there, it’s right there’. It’s important to remember that they are not asking to annoy you, or be difficult, the loss of peripheral vision has made it so they really can’t see it,” added Harlock.  

Depth perception and the ability to discriminate colors can also diminish as a dementia diagnosis progresses.

 

Hearing/Auditory Changes:

As dementia progresses, hearing changes can occur making it difficult for a person with dementia to hear certain pitches, particularly higher pitches.

In addition, as the disease progresses it can be hard for a person to distinguish between background noise and foreground noise.

“Whereas our brains can tune out background nose and focus on the conversation at hand, that can become increasingly difficult for a person with dementia, making it hard for them to follow a conversation,” added Harlock.

Creating a quiet and calm environment can be helpful when trying to communicate with a person in that stage.

 

Sensory Perception:

The importance of sensory perception can often be overlooked. However, sensory perception can be very important for people with dementia. Often they can become too hot or cold, and even the feeling of clothing can be uncomfortable for the person, so try to be mindful of that.

 

Processing Time:

When having a conversation with someone we expect them to respond back in a timely manner or give us non-verbal clues that they are thinking about their answer. This processing time can change significantly for a person with dementia.

“Processing time for someone with moderate to late stage dementia can take up to 90 seconds,” said Harlock. “In that case, repeating what you said louder again and again won’t help, it will only frustrate the person. Slow it down and give them a chance to process the information,” said Harlock.  

 

Language:

“Many times, in the late stages,  a person with dementia may revert back to their primary language. For instance, if a person’s first language was Spanish, and they learned English later in life, it is not uncommon for a person to begin solely speaking Spanish,” added Harlock.

 

Emotion:

Emotion can play a large part in communication for someone with a memory or mood disorder.  For example, if a person is anxious it causes them to be distracted, which can affect their ability to retain information.

“It is important to recognize that a person’s emotional state will impact their ability to communicate,” said Harlock. 

 

Verbal vs. Non-Verbal Communication:

 

There are many things you can do as a care partner to make communication easier for you and the person you’re caring for, both verbally and non-verbally.

 

Verbal Communication:

 

Word Choice:

When speaking, avoid slang or jargon. Remember to slow it down, including both talking slower and allowing for a longer processing period.

 

Tone of Voice:

“If you want someone to do something, make sure you are saying it in a way that makes them want to cooperate with you. If you are gruff, unfriendly, or you’re stressed out, the person will pick up on that and be less likely to do what you are asking of them,” said Harlock. 

 

Non-Verbal Communication:

 

“Most communication that happens is non-verbal. Body language, facial expressions and eye contact, all play a big role in communication,” said Harlock.

 

Facial Expression:

Facial expression can play a huge role in communication with a person who has dementia. “If you looking for someone to do something, make sure you are making the correct facial expression that will get you the cooperation you need, “ said Harlock.

 

Body Language:

“If you are acting aggressive or assertive a person with dementia will pick up on that and think ‘Whatever he/she wants me to do doesn’t look like fun, so I’m not going to do that.’ So make sure your body language is really calming.” added Harlock.

 

Gestures:

“If understanding language has become very difficult, we can use gestures to get our point across,” said Harlock

 

Eye Contact:

“Due to the vision loss, make sure you are in their line of sight and engage them in conversation,” said Harlock.

 

Effective Techniques will vary from person to person and type of dementia to type of dementia, however generally these tips can be very useful for creating meaning and effective communication.

 

1.     Speak slowly and calmly

2.     One question or instruction at a time, keep it clear and simple.

3.     Allow time for a response. *remember it can take up to 90 seconds to process the information and respond

4.     Tell the person what you want them to do, not what you don’t want them to do.

5.     Be more positive in your communication. Avoid using the word no (unless safety is at risk, then use the words you need to

6.     Simplify questions, don’t make them too long, keep them clear and concise

 

Techniques:

 

There are a few additional techniques that can help have more positive and productive communication with the person in your care.

 

Validation:

Validation is a way of opening up communication lines.

If the person you are caring for keeps saying ‘I want to go home now’ rather than saying something terse, like ‘you are home’ over and over,  try a different approach like, ‘tell me about your home or what home are you thinking about.’

This method will open the door and allowing for meaningful and productive communication.

 

Therapeutic Fibbing:

Described as a detour from the truth, this technique can be very helpful and very kind for the person with dementia. This technique is best used when telling the truth will be more hurtful than helpful.

“I once worked with a woman who had dementia and would get very upset that her mother didn’t know where she was. She would become agitated wanting to get in touch with her mother. Unfortunately, the woman’s mother had died many years ago, however, instead of saying ‘your mother passed away’ only creating further agitation. we would use therapeutic fibbing to say something like “Your mother called, she wants you to stay for dinner,” and immediately the woman would calm down and be so relieved that her mother was no longer worried,” said Harlock.

 

Watch the full presentation below:

 

The content of this post is intended for general educational and informational purposes only; it does not constitute medical advice.  Readers should always consult with a licensed healthcare professional for diagnosis and treatment.

Caregiving Through the Holidays – Facebook Live Recap

Often, the holiday season can seem overwhelming for those caregiving for loved ones with memory disorders. Between navigating logistics and managing expectations for both family members and the individual in your care, it can feel like the holidays are filled with more stress than joy. 

Sarah Harlock, program director for the DENT Integrative Center for Memory, shared her tips for managing the stress of the holiday season, while also finding time to enjoy the company of loved ones. 

“It’s very important to recognize how the holidays impact people with cognitive impairment and how that can impact caregivers,” said Harlock. “Even though the holidays are joyful and something we look forward to, if your day is already filled with the activities necessary to care for a loved one, adding the events and expectations of the holiday season can seem overwhelming.”

Understanding the Diagnosis

“I think it’s always important to go back to understanding the diagnosis. Often we use the terms Alzheimer’s, dementia and memory loss interchangeably, but they are very different, and each one of those diagnoses has different stages, so it’s important to understand the person you’re caring for.”

Neurodegenerative disease like Alzheimer’s or dementia are progressive disorders, so understanding the stages people are at is important in understanding how they will be affected by the holiday season.

 Someone who is in an early stage of any of these conditions may have very little change in their holiday routine and may still enjoy the season very much.  However, someone in the later stages of this illness may struggle more with the non-stop action and changes to their routine.

Evaluate your Traditions, Beliefs and Expectations

“I think it’s important that people are evaluating their traditions and beliefs and looking at their expectations. Sometimes, we get caught up in the fancy wrapping, or perfectly decorated house, and while those may have been important before, it’s important to evaluate whether or not they are still important and whether they are really at the essence of the tradition,” said Harlock.  “So, I encourage people to take time to think about what these traditions are really about, and rarely are they about fancy wrapping and perfectly decorated houses. They’re about spiritual connections and growth with other people,” said Harlock.

Often, there is more than one way to honor a tradition or belief. Although you may have celebrated the holiday season a certain way for decades, now you may have to make some changes. It is important to evaluate your expectations as a care partner and prioritize the events that are the most enjoyable and most meaningful, and which ones will be too stressful for the person you are caring for.

“Try to look at what’s important versus what you’ve always done,” added Harlock.

Plan Ahead

Communicating changes is very important. If in the past you hosted the family event and that is no longer feasible, begin planning early for those changes.

All adjustments come down to communication. It’s okay to let loved ones know why you’re changing things up and what they can expect. Be open to family recommendations, but be realistic. If you need to stand your ground, stand your ground.

“Allow yourself and other people to be disappointed that you have to change your traditions. This is a loss, and it’s important to acknowledge that loss,” said Harlock. “However, while I encourage you to acknowledge that this is a loss, don’t get stuck in it, there are many ways to honor a tradition.”

Routine

People with dementia do best when they stick to a routine, so try to keep the routine consistent, even through the holiday season.

The non-stop activity can be tough for the caregiver and the person with a memory disorder, so do your best to keep the changes as minimal as possible. It is important to note that changes in environment, like holiday decorations, can be disturbing for people with dementia, so consider pulling back on some of the more extreme decorations.

Tips for Caregiving through the Holidays 

1.Wherever possible, include the person who has the diagnosis

If the person you are caring for is able to articulate what events they enjoy participating in during the holidays, and what they could give up, have that conversation.

2.Think about where the events will take place

Consider where the holiday events will take place. Take into account the routine changes and consider the environment (hot, noisy, and crowded) and plan accordingly.

3. How long is the event?

If the event is going to last 8 hours and you know that may be overwhelming for the person in your care, consider just going towards the end for coffee and deserts. It may be easier to break the holidays up into smaller events, over four or five days. 

4.Time of the event

Historically, people with dementia struggle with increased anxiety and confusion in the late afternoon or evenings. Consider switching the event from a dinner to brunch. That way you are still honoring the tradition and getting together as a family, you’re just changing the timeline.

5.Try to set aside a quiet space for your loved one.  

People with dementia struggle with commotion, which the holiday season can be full of. To avoid overwhelming that person, consider having a quiet room to give the person with dementia a chance to break from the chaos. This is especially helpful if the person has trouble following a conversation with a group of people. This space will give your loved one a chance to have more meaningful one on one conversations.

6. Decorations can be overwhelming for a person with dementia.  

Try to minimize the distractions. Decorations can add stimulation that might be upsetting or overwhelming for the person you’re caring for.  

7.  Be realistic and flexible

Think about what the holidays mean to you and find ways to participate in and honor your traditions that are enjoyable for both you and the person you’re caring for. 

Check out the entire presentation below.

The content of this post is intended for general educational and informational purposes only; it does not constitute medical advice.  Readers should always consult with a licensed healthcare professional for diagnosis and treatment.