Category: Progression of Dementia

Are you Connecting?

Connecting

Never underestimate how important it is to empathize and communicate effectively with your loved one living with dementia.  All too often they become “different” or “unreachable” as their dementia develops. You might despair that the person you once knew is completely gone.

You may grow tired, frustrated, or even angry with your loved one; and from this position any hope of healthy and effective conversation is lost. The good news is that we are in control of these emotions.  With a little bit of compassion, we can find new ways to say hello and build engagement with our loved ones where it is still possible.

 

How can we learn to understand?

In the early stages, talk to them! Ask simple, genuine questions.  See if they want to talk to you about what they are going through and changes they are noticing.  This is going to require patience, your most important skill going forward.  You might as well begin developing it now!  Remember your body language will need to match what you say.  Want to learn more, read our previous post.

In addition to simple conversation, you may want to consider joining a support group or looking for other resources online.  Some of these resources are authored by those who are experiencing dementia themselves. These will help us understand what a loved one is going through.

One blog that we recommend is My Voyage With Dementia. The blog is a collection of thoughts from a 79-year-old man living with dementia in Canada. The author, Bob Murray, uses his blog to keep his mind active and to fight against decline.  He has created an expansive collection of writings that give us an unfiltered look into what the world is like through his eyes.

Another great read is Dancing with Dementia; a book written by Christine Bryden who was diagnosed with dementia at 46. Dancing with Dementia records Cristine’s experience living with dementia, exploring the effects of memory problems, loss of independence, difficulties in communication, and the exhaustion of coping with simple tasks. Like Bob, Christine’s writing is used as a tool of empowerment and shines a valuable light onto the perspective of a person with dementia.

At the end of the day, the more you are informed about dementia the more you can understand the experiences of your loved one and the better you can care for them. It is important to know the facts, the objective data, the things the doctors will tell you about dementia, but it is also essential to know how to connect emotionally.  How do they really feel?  What does the world look like to them?

 

Work with an expert

NursePartners has been working with older adults since 2002.  We love it so much that it is all we do.  All carepartners are dementia trained by certified dementia practitioners.  Want to know more about how we can help you?  Give us a call today at 610-323-9800.

 

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Denise uses the Positive Physical Approach to Care to guide non-verbal client

Sleeping Patterns and Alzheimer’s disease

It is common for people with Alzheimer’s to experience changes in their sleep cycles. The association between sleeping problems and Alzheimer’s has been noted but scientists do not yet completely understand why these sleep disturbances occur. As with changes in memory and behavior, sleep changes somehow result from the impact of Alzheimer’s on the brain.

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Sleep changes in Alzheimer’s may include:

Insomnia. Many people with Alzheimer’s suffer from the inability to stay asleep. They may wake up more often and stay awake longer during the night. Those who cannot sleep may wander, be unable to lie still, yell, or call out to a caregiver.

Daytime napping and other shifts in the sleep-wake cycle. It is also common for individuals with Alzheimer’s to feel drowsy during the day and then be unable to sleep at night. Daytime naps are common and they may become restless or agitated in the late afternoon or early evening. In extreme cases, people may have a complete reversal of the usual daytime wakefulness-nighttime sleep pattern.

For sleep changes due primarily to Alzheimer’s disease, there are non-drug and drug approaches to treatment. However, most experts and the National Institutes of Health (NIH) strongly encourage the use of non-drug measures rather than medication. The use of sleep medications in patients with dementia is associated with a greater chance of falls and other health risks that likely outweigh their benefits.

Non-drug treatments for sleep changes:

Non-drug treatments aim to improve sleep routine and the sleeping environment in a way that is natural and safe. It is all about managing daytime energy levels and creating a comfortable environment for sleep optimization during the night. Non-drug coping strategies should always be tried before medications since some sleep medications are known to have serious side effects. Here are some tips for repairing the sleep cycle of a loved one with Alzheimer’s:

  • Create a routine.

Maintain regular times for waking up and going to sleep. It is recommended that adults over 50 get at least 6 hours of sleep during the night. In addition to scheduling a time for waking and going to sleep, meal times should also be loosely coordinated. What we eat and when we eat it contributes greatly to our levels of energy throughout the day. For peak energy during the day breakfast should be of a substantial size and never skipped. The last meal of the day should be consumed no later than an hour before bed. This gives the body time to digest before it falls asleep, allowing for a more dormant and deeper sleep during the night.

  • Seek morning sunlight exposure

Our circadian rhythm is intrinsically linked to the day/night cycle of the sun and moon. Getting outside in the morning and exposing the skin to sunlight is extremely effective for boosting energy levels and improving our overall moods. Try taking your loved one outside for at least 10 minutes every morning and getting some sunlight. The more sun – skin contact that is possible, the better. Practicing this daily, you are sure to see the benefits not only for your loved one, but for yourself as well.

  • Encourage regular daily exercise, but no later than four hours before bedtime

It may sound counterintuitive, but exercise is a great way for boosting energy levels during the day. If one is laying around on the couch watching TV all day, it is unsurprising that they may feel tired or sluggish (think Newton’s first law of inertia!).  Combine your outside sunlight time with a walk around the neighborhood if possible. If it is not, try alternatives like chair yoga.  Exercise and movement are vital for regulating our levels of mindfulness, energy, and sleep.

  • Avoid alcohol, caffeine and nicotine

Stimulants that alter our mindstate have been found to also affect our levels of sleep. If your loved one is experiencing trouble sleeping and is also consuming these common stimulants regularly, try cutting them out and see if an improvement in sleep follows.

  • Treat any pain

Sometimes physical pain from other medical conditions (joint pain, lower back pain, stomach pain, etc.) can prevent someone from falling asleep properly. If this is the case for your loved one, seek ways to reduce their pain so that they may be more comfortable when they lay down to sleep.

  • Make sure the bedroom temperature is comfortable

Your bedroom should be quiet, cool, and dark for the best chance at getting good quality rest. When providing a room for someone with Alzhiemer’s to sleep in, make sure it is dark and a bit on the cooler side to optimize their sleep. You can provide them an extra blanket or two on the bedside in case they get too cold, but it should never be too hot that they feel uncomfortable or start sweating. Starting at a baseline that is cool, you can then allow them to adjust their temperature with the use of blankets until they are comfortable.

Medications for sleep changes:

In some cases, sleep disturbances may be so severe that non-drug approaches fail to work. For those individuals who do require medication, it is very important to seek the advice of a medical professional first. The risks of sleep-inducing medications for older people with dementia are considerable. They include increased risk for falls and fractures, confusion and a decline in the ability to care for oneself. The decision to use an antipsychotic drug should be considered with extreme caution. These drugs are associated with an increased risk of stroke and death in older adults with dementia. The FDA has ordered manufacturers to label such drugs with a “black box” warning about their risks and a reminder that they are not approved to treat dementia symptoms.

 

Treatment Goals

Treatment goals are likely to change during your journey with Alzheimer’s disease. Make sure you understand all the available options and the benefits and risks of each choice as your treatment plan evolves. At Nursepartners we service our clients with highly trained and professional nurses who are trained in implementing a wide array of different care strategies. To learn more about the services we provide call us today at 610-323-9800.

 

NursePartners’ team is available 24/7.

Call us today: 610-323-9800.

 

Understanding the Progression of Dementia

Dementia is a progressive condition, worsening over time, eventually leading to death. Many people never are diagnosed, and for others, it might take years to realize something has changed.

As a caregiver or loved one, it is important to look out for these changes, recognize them when they occur, and adapt the level of care as needed. To learn about your loved one’s state of dementia it is important to talk to them about it. Ask them what they are feeling and if they are noticing any differences in their ability to think or to remember things. However, be aware that many people living with dementia may not realize something has changed. If they do not want to discuss these changes, do not press them or show frustration yourself.

Take notice of any patterns of behavior as they arise and be sure that your loved one knows you love and support them as these changes occur. As dementia progresses   it is common for our loved ones to begin to feel guilty about their condition, to feel as if they are a burden on others. If left unchecked these feelings can develop into a serious depression and can add to the stress they are already experiencing. This inability to connect and comfort patients is a persistent problem in the way that a lot of caregivers approach working with someone living with dementia.

To connect with someone living with dementia, we need to join their world, not force them to conform to ours. Instead of resorting to antipsychotic medications and confinement, try embracing what they still do well. While there is merit in a lot of the medications being provided today, there is often so much more we can do for our loved ones when we are able to understand and sympathize with what they are experiencing. In other words, patience and compassion can go a very long way when caring for a loved one with dementia.

NursePartners’ approach to Alzheimer’s and dementia care is based on The GEMS™: Brain Change Model created by Teepa Snow. NursePartners recognizes the Teepa’s Positive Approach™ to Care as an effective method to provide care for loved ones affected by dementia. This approach categorizes dementia stages with six different gemstones, defined by unique characteristics. Click here for an overview of the classification system.

By being able to identify what stage of dementia your loved one is currently experiencing, you can create a style of care that helps them to feel loved and at ease. For example, patients classified under the Amber gemstone find great pleasure with hands on activities like painting, stitching, or drawing. While doing these activities patients are often observed to be focused, calm, and at peace; and when caring for a loved one with dementia, minimizing anxiety and maximizing these times of eternal peace is a great example of providing great care.

To learn more about NursePartners and the services we are able to provide for you and your loved ones, check out our Services Overview.

 

Personalizing care techniques can reduce behavioral and psychological symptoms of dementia

The most effective care begins with forming a connection, which includes meeting clients where they are in the disease process.

The Tailored Activities Program (“TAP”) aims to reduce behavioral and psychological symptoms of dementia (“BPSD”). This is often what we struggle with as family members and caregivers. How do we engage the person with just enough activity to make them feel loved and needed?

Unchecked challenging behaviors can lead to increased healthcare costs, caregiver burden, and care recipient placement into facilities. There the person living with dementia usually faces pharmacological intervention, which may exacerbate these challenging behaviors or worse.

An Australian trial randomized 180 participants living with dementia by placing them into two groups. One group received 8 home care visits using the training from TAP to train the caregiver and engage with the person living with dementia. The control group received three phone calls with the caregiver about basic dementia related materials from a book, and did not involve the care recipient. Follow up continued four and eight months after the home care visits and phone calls.

The trial was done with individuals living at home or with relatives, outside of formal care facilities.

The results of the TAP pilot trial:

The TAP pilot trial showed overall reductions of incidences of challenging behaviors or BPSD. There were also reductions in other specific behavioral categories as defined by the study:

BPSD overall: F(1,41) = 7.58, p = 0.009, Cohen’s d = 0.72,

Shadowing: F(1,4) = 58.9, p = 0.003, Cohen’s d = 3.10, agitation, Wald X2(1) = 6.0, p = 0.014, Cohen’s d = 0.75

Repetitive Questioning: F(1,22) = 5.94, p = 0.023, Cohen’s d = 1.22

Argumentation: Wald X2(1) = 6.6, p = 0.010, Cohen’s d = 0.77 ()

To read more about the study, click here.

In many ways, TAP is like the Positive Physical Approach to Care as pioneered by Teepa Snow. NursePartners has embraced this methodology since the inception of our GEM division in 2015. It builds on the intuitive notion to engage with people living with dementia according to their life experiences and interests. By appealing to their sense of self-worth, we can prevent or mitigate some of the most challenging behaviors.

 

NursePartners trains all carepartners in the GEM methodology as perfected by Teepa Snow.

All carepartners are trained to engage with clients, focusing on what they still can do and letting go of what they cannot. Even at the most advanced stage of dementia, you can find new ways to say hello and make the person feel valued and with purpose.

To learn more about how we can engage your loved one living with Alzheimer’s disease, Frontotemporal dementia, or another form of dementia, call us at 610-323-9800.

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Angela scheduled to be keynote speaker for “Remembering Those Who Forget”

We are excited to announce that Angela will serve as the keynote speaker for the Presbyterian Older Adult Ministry (POAM) at the event, “Remembering Those Who Forget”.  Angela will talk about her decades of experience working with those living with dementia.  She will be sure to touch upon practical care approaches that can be implemented immediately, in addition to giving her clinical perspective on the disease.  The event is open to those wanting to learn more about Alzheimer’s disease and other forms of dementia.

We would appreciate registration prior to attending the event.  This event is scheduled for next Thursday, May 2, at 8:30am to 1pm in Plymouth Meeting.  Exact details can be found via this link: https://presbyphl.org/events/presby-older-adult-dementia-workhop/

Early warning signs of Alzheimer’s disease or another form of dementia

NursePartners presents on behalf of the Alzheimer’s Association.  One of the most commonly requested presentations discusses the early warning signs of Alzheimer’s disease or another dementia.  We compare these signs with others that are more typical of age-related changes.

It is very important to remember that each person is unique, with their own baseline. If you are looking to identify a developing form of dementia, consider all factors that make up that individual, including their personality, life experiences, family, and education. Warning signs are problematic when a few more or more exist.  

The signs of normal aging are just examples. These vary depending on each person.  If you have additional questions, you are welcome to call our 24/7 line at 610-323-9800 or the Alzheimer’s Association hotline 1-800-272-3900.

If you would like to see one of our dementia practitioners or coaches speak, join us at an upcoming event or request one by calling 610-323-9800.

 

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How dementia care is different from traditional home care

Why work with a home care company that specializes in dementia care?

Most non-medical home care companies care for those living with dementia, but services are not equal among providers. There are over 80 types of known dementias and each present a unique set of challenges.

In addition, a client’s progression of dementia depends on their background, personality, and support system. No two clients are ever alike.
Even if a company develops a comprehensive plan of care that includes all of these components, they still need to ensure that the direct care team remains informed and is relatively stable. If either falter, so does the quality of care. Carepartners must remain in communication with one of our registered nurses or dementia coaches throughout the process. They communicate with one another through client care record sheets and a journal that symbolizes the development of their relationship with the client.

Carepartners undergo an educational seminar, role playing scenarios, and additional dementia training before ever assuming their first assignment with a client living with dementia. Additional training is provided for more challenging types of dementia.

NursePartners created the GEM division to care for those living with dementia. This is distinct from our traditional home care division. We put together a plan of care based on the client’s type of dementia, specific needs, background, personality, and support system. Each client is associated with a GEM stone, which indicates where they are in the progression of the disease.

At each stage, we alter our approaches for connecting and providing care. Verbal cues become less effective than visual and touch cues as the disease progresses. We also are aware of the client’s visual scope and in which directions it declines.

If you have questions about how your loved one could benefit from GEM care services, we are available 24/7 to take your call: 610-323-9800.

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Carl and Melva painting together on a cold winter day.

Gantenerumab Clinical Study for those living with Alzheimer’s disease or a Mild Cognitive Impairment

NursePartners is excited to partake in the Graduate I study run by the Clinical Trial Study Group LLC in Jenkintown (www.theclinicaltrialcenter.com.) 

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The Clinical Trial Study Group LLC is looking for adults 50 to 90 years old to participate in this study.  Participants need to be diagnosed as living with an early stage of Alzheimer’s disease or demonstrate mild cognitive impairments which are indicators for the later development of dementia.  The third requirement is that the participant have a “study partner”.  This study partner has at least 10 hours per week of contact with the participant, enabling the study partner to provide accurate information about the participant’s cognitive and functional abilities.

What are the early warning signs of Alzheimer’s disease and other dementias?  See this article.

Participants will either receive an injection of gantenerumab or a placebo, beginning every four weeks and then occurring every two weeks.

What is gantenerumab?

“Gantenerumab is a fully human monoclonal antibody designed to achieve specific and highly sensitive recognition of the assembly structure of major
components in Aβ plaques. This hypothesis has been supported by the results of preclinical studies.”

What is a placebo?

A placebo is a “dummy” drug with no active ingredients.  It is given in order to mitigate against the psychological bias that result in some participants feeling better or worse just for have been given an injection (versus not receiving one).

Want more information about this study?  Call 215-884-1700 or visit the Clinical Trial Center via their website, www.theclinicaltrialcenter.com.

NursePartners, Inc. clinicians are participating in the administration of gantenerumab and the placebo.  However, this is a clinical study whose results are uncertain.  We encourage those interested to ask more questions and to consider all options.

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Carepartners work through role play scenarios with dementia coaches and practitioners

NursePartners practices the Positive Physical Approach to CareTM as developed by Teepa Snow and her team.  Each client living with dementia is classified by a GEM stone.  The characteristics of these GEM stones, along with the client’s personality and unique life experiences, dictate our approach.

All carepartners are trained to connect before providing care.  Simply put, we find this the most effective method.  Too often, carepartners push forth their agenda without enough emphasis on how it is affecting the client.  The mentality is to complete the “to do” list as soon as possible.

Unfortunately, older adults are not always moving at our speed.  If they are living with Alzheimer’s disease or another form of dementia, the situation becomes even more complicated.  The older adult may not realize what we are trying to do, even though these actions are intended to assist them.  When we rush to complete tasks, this can lead to unfavorable outcomes.  If we provide care before connecting, this can increase anxiety, depression, or lead to aggression.

All carepartners are trained in the Positive Physical Approach to CareTM methodology.  During orientation, carepartners work with dementia coaches and practitioners as they role play challenging scenarios.  We want carepartners to be prepared for all types of situations.

Carepartners are trained to put their agenda away and go with the flow.  They focus on connecting before rushing to provide care.  This simple investment of time pays dividends in the long run as a meaningful relationship is developed between the carepartner and the client.  The result is that the client becomes more receptive to receiving care.

In this video, Denise encounters a client actor (dementia coach) who is non-verbal and fixated on a task.  Instead of demanding that the client focus on her, she engages him in his task first.  She continues to have a conversation, even though he does not respond to her.

When it is time to perform the caregiving task, Denise is patient as the client stands up.  She respects his independence and does not rush to do everything for him.  Denise helps explain how to get up and helps stabilize his gait during the process.

As he stands, she lightens the mood with movement and rhythm.  Music and rhythm are deeply engrained in our brains and is one of the best ways to connect with someone living with dementia.  Carepartners that employ this preserved skill are more likely to succeed than those who do not.

Would you like to learn more about GEM care services or want to join our team?  Call us today at 610-323-9800.

Click to the link to see the full video:

Denise demonstrates the Positive Physical Approach to Care

 

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Denise uses the Positive Physical Approach to Care to guide non-verbal client

The GEMS™ brain change model

NursePartners embraces the GEMS™ brain change model developed by Teepa Snow.  Unlike other scales, such as the Global Deterioration Scale or the Dementia Severity Rating Scale, the GEMS focuses on creating constructive opportunities to engage with the person living with dementia.  Clients are still seen as people, rather than former individuals lost to the disease.

The GEMS allows us to adapt our care approaches to connect with the person in their moment.  We acknowledge what is lost, but use other senses to build meaningful relationships with our clients.

Services begin with a comprehensive assessment that goes beyond the clinical needs.  We want to know as much as possible about our clients’ preferences and personal histories.  This will allow us to connect from day one, building a durable and trusting relationship.   NursePartners changes the plans of care as we learn new information about each client.

All carepartners attend an initial orientation where they actively participate in a dementia workshop.  Carepartners learn the positive physical approach to care and contribute to a dialogue about the disease.  Dementia coaches then stimulate real life scenarios, filming each carepartner as they approach the hypothetical client.  Carepartners watch themselves as they approach clients, recognizing their strengths and acknowledge an area for improvement.  Scenarios are repeated until carepartners feel confident in the learned approaches.

Carepartners then complete a proprietary training module and final assessment, ensuring that they have understood the training.  At this point, they are ready to be assigned to a client living with dementia.  NursePartners admin will then assess if a client and carepartner would be a good match based on their personalities, interests, and general disposition.

All families are given a description of the GEMS model.  We want them to also connect with their loved one, continuing their relationships.  We help families understand that care techniques must adapt as a person progresses through the disease.  Here is a good summary of the six GEM levels.

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Want to learn more about how we can help your loved one living with a diagnosis of Alzheimer’s disease or another form of dementia?  Call us today at 610-323-9800.