As we know, often it is not what we say, but how we say it, that impacts our probability of success. It is no different than with caregiving.
Someone living with dementia is grappling with a loss of control. They are older adults who have lived their entire lives, led successful careers, raised families, and are used to being in control. It is not easy to accept the fact that they need help from others to carry on with basic tasks.
Therefore, consider the following phrases and how we might change them:
I want you to … –> May I help with that?
You need to … –> Can I do that with you?
That’s not what I told you … –> Would it be alright if?
No, not like that… –> How about we try it this way?
You can’t… –> How do you feel about this?
Let me do that for you… –> How about we do this together?
Why don’t you… –> Do you prefer this or that?
Don’t you remember? –> This is your (house/sister/son,etc.).
Please do this… –> Would you like to do that now or in a few minutes?
In addition to changing our phrases, we can also use new ones when we encounter difficult situations. If your loved one in angered or frustrated, acknowledge how they feel and explicitly express empathy. They do not like their situation any more than you. This will help them feel understood.
Some of these ideas came from the Mayo Clinic’s magazine “Living with Dementia”, specifically Chapter 3, p. 42.
NursePartners adopts the terminology “carepartner” to describe a “caregiver” who is a partner in a client’s care. The key word is partner, since the certified nursing assistant involves the client in their own care. This helps preserve the client’s sense of dignity and responsibility for their own well-being.
In particular, carepartners connect with clients before providing care. This requires getting to know more than that client’s clinical care needs and digging deeper into the client’s interests and life history.
It also involves using the hand-under-hand technique to guide and support the client to partake in their own care. Sometimes this can be used to help transfer a client, help bring a spoon to the mouth, or hold a sponge while bathing. For some tasks, the carepartner can help trigger muscle memory which allows the client to continue the action independently.
The Mayo Clinic also differentiates the term caregiver from carepartner.
“Learning to approach support and caring as a partnership means seeing the person living with dementia as a while person, and not making assumptions based on a diagnosis or label. It means including the person with dementia in decision-making. A care partnering approach is one of doing ‘with‘ rather than always doing ‘“‘for'” (Chp. 2, p. 18).
The advice from this article comes from NursePartners Positive Approach to Care training as defined by Teepa Snow. We have also incorporated information from the Mayo Clinic’s magazine, Living with Dementia: A Guide to Caregiving and Support. Specifically it came from Chapter 2, “Your role as a caregiver”. The original content was published by Meredith Operations Corporation in 2023.
A diagnosis of dementia affects everyone differently. According to the Mayo Clinic’s magazine, Living with Dementia: A Guide to Caregiving and Support,these reactions can summarized as follows:
Before the diagnosis, individuals and their families may have been frustrated by their inability to explain changes in mood, behavior, and memory. This is why sometimes a diagnosis can provide understanding into the true root cause and help individuals and their families adapt to the new reality.
The diagnosis empowers us to proactively support ourselves or our loved ones to find new ways to support the person living with dementia. The Mayo Clinic suggests that a diagnosis can:
Give us the answers to those changes in mood, behavior, and memory that we noticed before. Clarity can allow us to focus on what we can change, and acknowledge what we cannot.
Cognitive changes will be seen for what they are, a part of the disease process, instead of a defect of the individual.
We can support the older adult to leverage their current abilities to still live a life fully of meaning, focusing on what they can do, instead of dwelling on what they cannot.
We can prepare ourselves with information, support, and resources for those living with dementia. We can join support teams and learn from other who have gone through the journey.
Proactively connect and engage with the person living with dementia. Activity and socialization will help slow the disease progression and improve the quality of life.
Permit the person living with dementia to organize their health and financial legal documents and plan ahead for the future.
The advice from this article come from the Mayo Clinic’s magazine, Living with Dementia: A Guide to Caregiving and Support. Specifically it came from Chapter 1, “Adjusting to a diagnosis”. The original content was published by Meredith Operations Corporation in 2023.
Late-stage dementia can be a tough and challenging time for caregivers and loved ones. However, understanding what to expect during this stage can help make the experience more manageable. The progression of dementia is marked by changes such as memory loss, language impairment, and carrying out familiar daily tasks. Though it’s difficult to predict the exact course of this progressive disorder, the last stage of dementia has specific identifiable characteristics.
As caregivers, it’s important to understand what happens in your loved one’s brain and how that affects their behavior and capabilities. At NursePartners, our Certified Nursing Assistants (CNAs), also known as CarePartners, support and care for dementia patients whether they are aging at home or in a healthcare facility. We’ll connect with your loved one as they endure the last stage of dementia symptoms, which can be a challenging and emotionally charged experience.
It’s important to understand the final stages of this disease so you can better adjust your care techniques to be more effective. In this post, we’ll let you know what to look out for during the final stages of dementia.
What is Late-stage Dementia?
Late-stage dementia is the final stage of progressive brain disorder. This is when symptoms become severe enough to significantly interfere with daily life and everyday activities. The exact symptoms will vary from person to person, but they can be extremely challenging for the individual and their caregivers.
At NursePartners, we are trained in using The GEMS™: Brain Change Model, designed by world-renowned occupational therapist Teepa Snow. We use this approach to connect with and care for patients at every stage of dementia.
Under The GEMS™: Brain Change Model, Dr. Snow categorizes dementia stages as gemstones. It’s an approach that encourages a strong care partnership by seeing your loved one as precious, unique, and capable. Our CarePartners use this model to help them to live fully in their moment. The advanced stages of dementia are classified as follows:
Ambers prefer to live in the present and are sensation-driven, manipulating, gathering, and touching objects. They emphasize wants and needs and occasionally wander while unaware of risks. Since they have trouble comprehending and expressing needs due to their limited communication ability, choosing familiar and sensory-stimulating activities is best.
Rubies start to lose their motor coordination. They also experience difficulty with visual awareness and major sensory changes, causing them to require assistance with everyday activities and actions such as brushing, buttoning, and walking. Hand-under-hand assistance helps rubies feel safe and secure.
In the last stage of dementia are our Pearls. They are oblivious to their surroundings like a pearl layered and concealed within a shell. They are also motionless and quiet. Pearls cherish intimate moments by clinging to pleasant noises and recognizable voices.
What are the Symptoms of Dementia Towards the End of Life?
The symptoms of late-stage dementia can vary depending on the underlying cause. Still, people in the last stage of dementia are more likely to experience a decline in physical and cognitive function.
The last stage of dementia symptoms include:
Difficulty remembering names and faces
Struggling to speak coherently
Having a limited understanding of what is being said to them
Inability to walk
Difficulty swallowing and feeding themselves
Inability to use the toilet independently.
They may also suffer from weight loss, incontinence, and sleep problems. In addition, people with late-stage dementia are at an increased risk for falls and other accidents. As the condition progresses, they typically become bedridden and require around-the-clock care.
Further changes are common as a patient’s condition deteriorates within a few days or hours of dying. The person may:
worsen more quickly than before
be unable to swallow
become agitated or restless
develop an irregular breathing pattern
have a chesty or rattly sound to their breathing
have cold hands and feet.
How Long Does the Late-stage of Dementia Usually Last?
On average, the final stage of dementia last one to two years. Ultimately, the length of time a person spends in the last stage of dementia will depend on many factors, including the underlying cause of the disease and the individual’s overall health.
How to Support Someone During the Last Stage of Dementia?
Knowing that your family member or friend is near the end of life can be devastating, but making some plans may make things easier. When someone reaches the final stages of life, one of the main concerns is ensuring they are comfortable and as pain-free as possible.
There are a few things that you can do to manage difficult behaviors associated with late-stage dementia:
Create a calm and safe environment: Make sure the space around them is uncluttered and free from potential hazards. Consider using soft lighting and calming music to create a soothing atmosphere.
Encourage communication: Try engaging them in conversation and activities they enjoy. This can help them feel more connected and less frustrated.
Provide support: It is important to provide physical and emotional support to the person with dementia and other caregivers. This can help reduce stress levels and prevent burnout.
Professional Help for Late-Stage Dementia Available in Philadelphia, Montgomery, Chester, and Delaware Counties
For 20 years, NursePartners has supported families by providing compassionate and experienced nurse care to their loved ones living with dementia. We will work with you to devise a comprehensive care plan for your relative.
Contact us today by calling 610.323.9800 for a free consultation. You may also complete our online contact form.
Our traditional home care clients are entitled to a basic list of rights, which we call the “Bill of Rights”. We keep these in mind throughout the entire process, from meeting the client, forming the care team, and through supporting them throughout the length of service.
Know his/her rights.
Choose the home car agency that will provider their care.
Receive competent care without regard to race, creed, color, age, gender, sexual orientation, or national origin.
A personal and written care plan and participation in decisions affecting their care.
Receive services with reasonable accommodations of individual needs and preferences.
Be treated with respect, consideration, and kindness.
Be served by dependable and responsible caregivers.
Enjoy confidentiality regarding all medical, financial, and personal information.
Be free of physical, verbal, emotional, and sexual abuse from anyone, including caregivers.
Request caregiver replacements when necessary.
Contact the agency twenty-four hours a day, seven days per week.
Receive services as contracted and given an explanation of all changes.
Voice complaints, have them reviewed, and resolved without an interruption in service.
Receive referrals to other health care providers if the service is denied based upon the ability to pay.
Refuse any treatment or service.
Entitled to privacy, modesty, and security.
Have their property respected.
If the client is living with dementia, they are entitled to the rights above, in additional to a few more which are worth enumerating.
To be informed of their diagnosis.
To have appropriate, ongoing medical care.
To be productive in work and play.
To have expressed feelings taken seriously.
To be free from psychotropic medications if at all possible.
To live in a safe, structured, and predictable environment.
To enjoy meaningful activities to fill each day.
To be out-of-doors on a regular basis.
To have physical contact including hugging, caressing, and handholding.
To be with persons who know one’s life story, including cultural and religious traditions.
To be cared for by individuals well-trained in dementia care
How Do Caregivers Deal with a Patient Who Refuses to Bathe?
Being a family caregiver for an older adult is a selfless act of kindness, love and loyalty. Such a noble role, however, can prove challenging, especially for those who were not trained as professional caregivers. We are reminded of this on difficult days, such as when our elderly relative refuses help with bathing.
Many seniors refuse to bathe due to the onset of dementia, concerns about safety in the tub, a lack of interest, arthritis, or other issues. Bathing is an important part of personal hygiene, and we must make sure this need is met, even if that requires us to change our approach. Private nurses and professional caregivers are trained to do just that.. Here are some of their tactics:
Use Negotiation Skills
Even though the older adult requires care, we must be careful to respect their dignity. They have lived long and fulfilling lives and do not appreciate taking instructions as if they were children again. In brief, this means that they do not like being told what to do. Private nurses and professional caregivers take the time to connect before providing care. This might mean preparing a favorite meal or taking them to see a friend after bath time.
Speak Favorably About Bath Time
Trained and experienced carepartners understand your loved one’s mindset and frame bath time as a positive experience rather than a chore. For instance, they may use the words, “pampering” or “relaxing” in reference to bathing. They may even use nicely scented soaps to encourage your relative to relax while taking care to warm a towel for use before getting out.
In addition, private nurses are more compassionate and sensitive to patients who may be embarrassed by body odors and soiled clothing. This in turn helps the elderly patient to feel at ease.
Professionals rely heavily on positive reinforcement in their work. Elders, just like everybody else, love compliments. A private nurse will be quick to point out how good a senior smells after taking a bath, compliment them on their choice of clean clothes, and so on.
Make it a Gradual Process
A full shower or bath may be intimidating for some elders. Maybe your loved one falls into this category. A private nurse could break down the task into stages to make it easier. They may begin with simply asking to wipe off your loved one’s face. If they are receptive then the private nurse will gradually move to gently clean their underarms and other parts of the body, all while engaging them in conversation.
The private nurse will stop once your loved one becomes resistant. They know that your relative may eventually warm up to the idea of a full bath or shower.
Having the Know-How
Some seniors may not like the idea of getting a bath from a stranger. This is why it is important to build your care team early. Trust takes time to develop. After establishing a routine, older adults become comfortable with assistance, even when it requires help bathing.
Nurse Care in Philadelphia, Delaware, and Montgomery Counties
Getting your aging loved ones to take a bath can sometimes feel like an uphill battle. Fortunately, you have access to professional help. At NursePartners our private nurses are experienced in helping your loved ones to maintain proper personal hygiene while helping them to keep their dignity intact. They are also trained to assist your loved ones with their medical needs.
Contact us today by calling 610.323.9800 for a free consultation.
For most of us, routines are a key part of our day-to-day lives. Routines are powerful tools that keep us energized, productive, and most importantly – grounded during a stressful time.
Overall, routines are a key component of staying healthy. For people with dementia who have trouble receiving and storing new sensory information, routine and repetition are critical to function.
A model routine includes set times for waking up and going to sleep, regular hygiene practices, consistent eating patterns and other key activities. The effect the coronavirus pandemic has had on daily life has unfortunately disrupted much of our normal routine living. Disrupting the routines of those with dementia creates a lot of stress for someone who cannot track information. The pandemic is already stressful enough to most of us, yet for those suffering with dementia this abundance of stress can lead to an increase in confusion and memory issues. The good news is that this is most often temporary and can stabilize once people get back to a routine.
Ways to help
Here are some recommendations for the best ways to help a loved one with dementia during this time:
Stick to a routine as much as possible.
In all the chaos and confusion of the pandemic, creating structure and routine in your loved one’s life can create an environment that is comforting with clear expectations. One way to implement a clear routine is to have a white board, or a calendar on the wall that includes a plan for the day. You can alter these to reflect new activities to be done throughout the day and week.
Online communication is a valuable tool in times when we may not be able to visit our loved ones face-to-face. From Skype, to Facetime, to Facebook Video calls, there is a great deal of technology that can help you keep in touch with your loved one and fight social isolation.
Beware of negative media.
While online communication can be a good and useful tool for connecting, you must also ensure that your loved ones are not being bombarded by fear and hysteria in the free time they spend online. Exposing your loved one with dementia to too much negative information can have serious effects on their emotional state. While they might not remember the details of newscasts, they hold on to the emotional information. As a result, they may feel increased fear, anxiety and stress, but not understand why.
Engage your loved one with activities, hobbies or listening to music.
Focus on the Past
Since taking in new information is difficult, focus on reminiscing – talk about past events, trips, other activities that they have done.
Signs to watch
In times of stress, someone with dementia may experience increased confusion or agitation, or may exhibit behavioral changes and act out of character. This is most often only temporary.
However, if you notice some of the following behaviors developing, you should contact your care provider:
If your loved one is acting out of character or begins putting themself in danger by wandering off or becoming physically aggressive.
If there are new areas of confusion or new types of behaviors that persist over the course of several days.
We understand these are difficult times, and for our loved ones experiencing memory disorders, it can be even more trying. Remember, we are all in this together. .
NursePartners creates permanent care teams to introduce stability and routine into the lives of older adults. All teams are managed by a registered nurse and certified dementia practitioner. Care is provided right at home, or wherever home may be. Want to learn more about how we can help you? Call us, and ask for Angie, Carole, or Jessica:
Early symptoms of dementia can be subtle and vary between people. While some people pick up on changes in their own thinking or behavior that might be caused by dementia, sometimes these signs are first noticed by those around them.
If you have noticed a change in someone close to you, the steps below can help you assist them in seeking diagnosis and treatment.
Identifying the Early Indicators
Early diagnosis can help people better live with the disease, giving them options to pharmacological and social remedies that have help to slow the progression of dementia. It also allows your loved one to have control in preparing for their future.
Early signs that a person might have dementia can include:
Being vague in daily conversation
Memory loss that affects daily functioning
Loss of enthusiasm or interest in activities that used to be fun
Difficulties in thinking or choosing the right words
Changes in personality
Difficulty following instructions
Difficulty following stories
If you notice these changes, try to find a time and place to have a conversation with your loved one. See if they notice these changes too.
Seek out a medical professional
Try to set up an appointment with a doctor. Any doctor can diagnose dementia, including a primary doctor.
If they are reluctant to see a doctor to discuss memory concerns, try to pair this appointment with a routine checkup.
Accompany your loved one to the doctor’s office to make the trip easier. Offer to take notes and drive.
Do not self-diagnose. There are other conditions that mimic signs of dementia and delirium, the most common being a urinary tract infection or depression. Others are medicines, stress, nutritional disorders, stroke, alcohol misuse, hormone disorders and brain. It is important to identify the cause, even if not dementia.
To know one person with dementia is to know one person with dementia
As of now, there are over 80 types of dementia, the most common form being Alzheimer’s disease. All people carry unique live experiences and family structures. This includes where we grew up, our occupation, and education. Throughout the progression, including in the beginning, appeal to the likes and interests of the person living with dementia. Simplify tasks if they are stuck.
It will take a team
The needs of someone living with dementia intensify throughout the course of the disease. Eventually all regular bodily system cycles may not correspond with those. Your loved one may want to be up during the night, eat at different intervals, and even wander and forget where they are going. You will be tested 24/7 all days of year, without vacation. Your job becomes thankless and their frustration may be taken out on you.
It is important to build your care team slowly as needs change. Consider at a minimum help every other day. This will be a good start in ensuring that your loved one’s needs are met and that they continue to engage socially with other people.
Let us be part of your care team
We have been caring exclusively for older adults since 2002.
Call us today to learn how NursePartners can help you through this journey: 610-323-9800.
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.
Denise uses the Positive Physical Approach to Care to guide non-verbal client
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.
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 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.