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THE IMPORTANCE OF SELF-CARE FOR CAREGIVERS

caregiver journal for wellness stress management

Anyone who has flown on a major airline is familiar with the safety instructions given before take-off, in fact frequent flyers might be able to recite them in their sleep. However, familiarity with an important principle does not make it any less important. In the event of a de-pressurization of the cabin, oxygen masks will appear and will need to be put on. The instructions always remind passengers that, should this happen, they must put their own mask on before they assist anyone else in putting on their mask. This may seem selfish, but it is rooted in stone cold common sense; put simply, if we ourselves are incapacitated in any way, it makes it much harder for us to offer meaningful assistance to anyone else.

And therein lies the gut-wrenching challenge for anyone caring for a loved one. And that applies to the estimated 40 million plus unpaid caregivers in the United States, doing their level best to care for someone they love. It is a role that few of us seek, but which many of us will find ourselves in; the love that binds us together will dictate that we do everything in our power to help those we love. They desperately need our help, so we give it without question to the utmost of our ability and often beyond that which we can physically, mentally or emotionally bear. Yes, caregivers are susceptible to various physical, mental and emotional challenges, and they can become ill due to the demands and stresses of their role. The caregiving responsibilities can be intense, often involving physical exertion, emotional strain, and prolonged periods of stress.

Some common health issues that caregivers may face include:

Physical Health Issues

Caregivers may experience physical health problems such as back pain, muscle strains, fatigue, and compromised immune function due to the physical demands of caregiving, including lifting, assisting with mobility, and performing other strenuous activities.

Mental Health Challenges

Caregiving can take a significant toll on mental health. Caregiving often involves high levels of stress, due to the emotional burden of providing care, especially in challenging circumstances, or for individuals with chronic conditions; all of this can contribute to mental health issues. Persistent stress can lead to burnout, a state of physical,
emotional, and mental exhaustion.

Sleep Disorders

The stress and demands of caregiving can disrupt sleep patterns, leading to insomnia or other sleep disorders. Sleep deprivation can further contribute to physical and mental health problems.

Neglecting Personal Health Needs

Caregivers are likely prioritize the health needs of the person they are caring for over their own; as a result they can neglect regular check-ups, preventive care, and necessary medical attention for their own health concerns.

Impact on Relationships

The strain of caregiving can affect relationships with family and friends. Caregivers may find it challenging to balance caregiving duties with maintaining healthy relationships, leading to potential conflicts and stress. It’s crucial for caregivers to recognize these potential challenges and to prioritize their own self-care. Seeking support from family, friends, or support groups, taking breaks, practicing stress-reduction techniques, and maintaining a healthy lifestyle are essential strategies to help caregivers safeguard their own health while fulfilling their caregiving responsibilities. Regular communication with healthcare professionals can also aid in addressing any emerging health concerns.

How to Sustain Quality Care

Firstly, understand just how important self-care for caregivers really is. A caregiver’s ability to provide effective care is directly linked to their own well-being. When caregivers are physically and emotionally exhausted, their capacity to offer quality care diminishes. Taking time for self-care helps maintain the energy and focus needed to provide optimal support. Caregiver burnout is a state of physical, emotional, and mental exhaustion resulting from the prolonged and overwhelming stress of caregiving. Regular self-care helps prevent burnout, allowing caregivers to continue providing care without compromising their own health. Caregivers who do find a way to practice self-care tend to be more resilient in the face of challenges.

By maintaining their physical and emotional well-being, they are better equipped to cope with stress and adapt to changing circumstances. Taking time for personal interests, hobbies, and relaxation contributes to a sense of fulfillment and happiness. This, in turn, enhances the overall quality of life for caregivers.

In summary, taking some time and space to care for oneself must never be seen as selfish, or a neglect of caring responsibilities; instead it must be seen as a critically important release mechanism to recharge batteries, re-center, take a breath and a little space, to ensure that they can continue to provide sustained, high-quality care to others.

Here’s a checklist put together by the National Institute on Aging for signs that you may be suffering from Caregiver stress: https://www.nia.nih.gov/health/caregiving/taking-care-yourself-tips-caregivers


Feeling exhausted, overwhelmed, or anxious Becoming easily angered or impatient
Feeling lonely or disconnected from others
Having trouble sleeping or not getting enough sleep
Feeling sad or hopeless, or losing interest in activities you used to enjoy
Having frequent headaches, pain, or other physical problems
Not having enough time to exercise or prepare healthy food for yourself
Skipping showers or other personal care tasks such as brushing your teeth
Misusing alcohol or drugs, including prescription medications


Is there anything you can do to help alleviate these challenges? Well, top of the list is to Ask for Help. This may seem obvious but often Carers are embarrassed to actually let people know that they are struggling. Family and friends are a great place to start – even if it is grabbing groceries for you when they are at the store, or popping in for a coffee, or to give you an hour off to take an hour off or run errands.

In addition, help is available from your doctor, or counselors, or from your local chapter of the Alzheimer’s Association
( www.alz.org )

A Mind to Care also has a 52-week Journal, designed to help Caregivers with a weekly check in to help manage stress, find breathing space, re-center and find nurture and self confidence in the challenges they face, click here: https://www.amazon.com/Caring-Caregiver-self-reflection-cultivating-compassionate/dp/B0CNYXC2C2/

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Simon Gidney guest appearance on the Caregiver Dave Radio & Video-Cast

Simon Gidney was excited to be interviewed on Dave Nassaney’s syndicated radio show/video-cast and podcast Caregiver Dave, heard in all 50 states and 135 countries, and 27 global audio and video platforms.

You can see the videocast interview, or listen to the audio here:

A New Alzheimer’s Game & Activity Therapy System, “A Mind to Care.” Simon Gidney (youtube.com)

A New Alzheimer’s Game & Activity Therapy System, “A Mind to Care.” Simon Gidney 01/16 by Caregiver Dave | Caregiving (blogtalkradio.com)

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Should We Always Tell the Truth to Someone Living with Dementia?

dementia care tips lying and protecting emotional well being

Living with Someone with Dementia

Dementia is a devastating and progressive disease that causes a decline in cognitive function, memory loss, and behavioral changes. One of the most difficult challenges for caregivers and loved ones of people living with dementia is how to communicate with them effectively. One question that often arises is whether it is ever right to lie to a person living with dementia.

Is it Okay to Lie to Someone with Dementia?

Your initial response to the title of this blog post may have been, “Yes, we should always tell the truth,” and “No, we should never lie.” After all, lying is generally considered to be unpleasant, negative behavior, and most of us are taught from a young age that honesty is always the best policy. Many of us will be familiar with the famous quote from Sir Walter Scott in his great 19th century poem, Marmion, “Oh what a tangled web we weave, when first we practice to deceive.”

However, when one is grappling with the day-to-day real world challenges of caring for someone who is living with Alzheimer’s or another form of dementia, carers often struggle with how to deal with or respond to situations or questions where the person they care for is being difficult, unresponsive, hostile or even seemingly absurd, or completely disconnected from reality.

Some might advocate that telling the truth is always the best course of action, no matter how painful it might be to the hearer.  However, when it comes to communicating with a person living with dementia, the issue can sometimes be more complex than a simple foregone conclusion.

People with dementia can often experience confusion, disorientation, and memory loss, which can lead to anxiety and distress. In some cases, telling the truth can actually exacerbate these feelings and make the situation worse.

Creative Lying and Therapeutic Deception

Imagine that a person with dementia is constantly asking about their spouse who passed away many years ago. Telling them the truth, that their spouse is no longer alive, may cause them to repeatedly experience the grief and sadness that flowed from that loss. This can be distressing not only for the person living with dementia but also for their caregivers and loved ones. In such cases, it may be more compassionate and beneficial to tell a “therapeutic lie” instead, such as saying that their spouse is out shopping or visiting a friend.

In other words, many carers believe that it is better to not challenge the absurdity, or reality disconnect in what is being spoken of, but rather to engage with the discussion and take it further, both to keep engagement and discussion going and to avoid the potential consequences of stress, agitation and upset.

Patti Davis, the daughter of US President Ronald Reagan, in her memoir “Floating in the Deep End,” coined the phrase “creative lying,” and how this would cause him to be less flustered when he was worried about missing what he believed to be an important obligation.” 

At a caregiver seminar that I attended in California, a young man who was caring full-time for his mother living with Alzheimer’s, addressed the group and shared that sometimes, usually towards the end of any given week, his mother would start to become difficult, unwilling to communicate with him and even hostile. She would refuse to take her medication. He prefaced what he was about to say with the words, “I apologize if some of you here are offended by this,” and then told the group that when his mother became difficult like this he would pop into the next room and put on a wig and a pair of clear-lens spectacles. He would then go back into the room where his mother was and would greet her by name and introduce himself as “Dr. Wilson” and say that he had come to remind her to take her medication. On every occasion, his mother greeted the “Doctor” warmly and happily took the medication.”

Interestingly, no one in the room full of professional and non-professional family caregivers offered any criticism of his actions at all, as he had clearly found a way to dissolve a difficult situation and achieve a successful conclusion, even though his actions were rooted in deception. 

I also heard a story once about a lady caring for her father who was living with dementia and how he became extremely agitated one day because a college had not sent him his certificate of achievement. This was impossible to resolve, as he had had no connection or involvement with the College in question and was certainly not due any kind of certificate. After a week of seeing her father become increasingly upset, agitated and angry about the failure of the certificate to arrive, his daughter created a Certificate of Achievement and presented her father with it when he enquired as to whether or not it had arrived. Once again, a piece of deliberate deception, but it diffused a difficult situation, dissolved agitation and removed stress.

Protect the Person with Dementia’s Emotional and Mental Well-being

However, it is essential to note that what we have referred to here as Therapeutic, or Creative lying, should only be used when it is necessary to protect the person’s emotional and mental well-being, to eliminate stress or agitation and maintain emotional equilibrium. The word “lying” itself seems so harsh, so absolute, yet we need to remember that, by selectively lying to the person they are caring for, a caregiver is actually supporting that person’s reality; lying to a person with dementia may be the right way to care for that specific person at that specific time because, depending upon the progression of the disease, they may be wholly unable to remember the truth, and repeatedly telling them they are wrong, or insisting on facts will simply cause them distress or pain. As the Alzheimer’s Association has stated, “it is important to put oneself in the shoes of your loved one, and acknowledge how frightening their situation must be.”

It must be noted that not everyone agrees that therapeutic or creative lying is ever the correct decision; they believe that distraction, or gently changing the subject, or rephrasing the question or issue can be just as effective at restoring calm or dissolving stress. This school of thought relies on a gentleness of response that soothes someone with dementia by essentially, avoiding or stepping around the problem or question that is causing anxiety. This approach does tend to assume that the person looking for their loved one, or worrying about a non-existent upcoming meeting, or waiting for a certificate in the mail, will either forget whatever is distressing them, or realize they were mistaken, or even eventually remember the correct facts and thereby peacefully move on.

A Complex and Sensitive Choice

In conclusion, the decision to lie or not to lie to a person with dementia is a complex and sensitive one and people may well have different and sincerely held views. But there does seem to be a significant body of real world evidence that suggests that therapeutic, or creative lying may sometimes be the best option to keep a person calm and maintain their emotional equilibrium. Ultimately, the decision to lie or not must be made on a case-by-case basis, taking into account the person with Alzheimer’s individual needs and circumstances.

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Agitation

Agitation: Common Dementia Symptom

Although it has perhaps not received the attention that it deserves, the issue of agitation is a common symptom in people living with dementia. It can be one of the most complex and stressful challenges to manage for caregivers.

It is estimated that more than half of people living with dementia may experience some degree of agitation at some point during the course of their illness and it is considered to be one of the core features of behavioral and psychological symptoms of dementia.

Agitation can manifest in various ways including verbal or physical aggression, restlessness, wandering, pacing, gesturing, profanity, and refusal to cooperate with caregivers. The effects can have far-reaching impact on caregivers. It has been linked to accelerated disease progression, functional decline, and decreased quality of life and is also a significant cause of caregiver distress.

In severe cases, medication may be required, including antidepressants and anxiolytic drugs. But wherever possible, priority should be given to non-pharmacological treatments or interventions, subject, of course, to professional healthcare advice.

No two individuals are identical and clearly what works for one may not work for another . But perhaps there are simpler and easier areas that a caregiver can examine first, hopefully without needing recourse to medication.

Here are a few suggestions:

Alleviate Physical discomfort

Perhaps at the top of the list is physical discomfort caused by, for example, pain, hunger, or thirst; each of these may trigger agitation. Consequently caregivers should always be aware of the individual’s basic needs, and try to ensure that they are met promptly. In fact, pain management is particularly important, as people with dementia may not be able to effectively communicate the level of pain that they are experiencing.

Our mood pointer sheet can be a helpful tool for those who have difficulty with speech.

Be Aware of Medication Side Effects

The side effects of medication can also sometimes cause agitation; some medications, such as antipsychotics, can have serious side effects. It probably goes without saying that caregivers should always work closely with relevant healthcare professionals to manage medications effectively to ensure that they are necessary and appropriate.

Minimize Environmental Triggers

Agitation may also be triggered or exacerbated by environmental conditions such as loud noises, very bright lights, “loud,” or very bold colors in rooms, or even unfamiliar surroundings. To minimize this, caregivers should try where possible to create a calm and familiar environment that minimizes noise and other distractions. (See our blog post on Colors and Dementia)

Maintain Routines

It is also true that the use of structured routines, coupled with familiar activities can work to reduce agitation as well as improving the individual’s overall sense of well-being. Allied with this, unmet needs, such as boredom, social isolation, or a lack of any meaningful activities, can also potentially contribute to agitation for someone living with dementia.

To try and avoid this, caregivers should identify any particular interests and preferences that the individual they are caring for has, or had prior to contracting the condition, and come up with activities that speak to or resonate with those interests.

In one example is a gentleman who had been a CPA in his professional life. His son found that activities that involved sorting coins seemed to particularly hold his attention and provide enjoyment for him.

It is clear that social engagement can definitely improve the individual’s quality of life and reduce agitation. This was the inspiration behind the development of the A Mind to Care Game & Activity Kit .

Gentle Touch

Although people do behave and react in different ways, it is true that touch can also be an effective way to reduce agitation in certain individuals living with dementia. A gentle touch, such as hand holding can have a calming effect and also provide a sense of comfort, security and reassurance, and can alleviate feelings of anxiety, restlessness or agitation.

Touch can also provide gentle sensory input and promote a calming effect; activities that involve touch such as providing a soft blanket, or tactile objects, such as fidget boards, can help to engage the senses and help to reduce agitation.

It is important of course to approach touch with respect and sensitivity, always obtaining consent and considering individual preferences and comfort levels.

Music

There have been numerous studies that have confirmed the benefits of musical intervention in reducing agitation in people living with dementia. This can be either active, where the individual participates in singing, dancing, or playing a musical instrument, or it can be passive, where they listen to music.

There is plenty of evidence that music seems to have a unique ability to evoke emotions and trigger memories; even for people living with advanced dementia, music is able sometimes to tap into deep-rooted emotional responses and stimulate positive feelings, and these emotional connections can help to reduce agitation and anxiety.

For a moving example of the power of music take a look at this YouTube video showing Lady Gaga and Tony Bennett Lady Gaga & Tony Bennett – The Lady Is A Tramp (One Last Time: Live At Radio City Music Hall, NY) HD – YouTube

Although agitation is a common dementia symptom, look for ways to prevent and minimize agitated behavior of the person living with dementia with these tips.

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Understanding the Benefits of Cognitive Stimulation Therapy for Dementia Patients

cognitive stimulation therapy

Cognitive Stimulation Therapy (CST) is a non-pharmacological treatment for people living with dementia. It is a structured program that involves engaging in group activities and discussions designed to improve cognitive function, memory, and quality of life for people with dementia. CST is a person-centered therapy that focuses on the individual’s strengths, abilities, and interests. In this blog, we will discuss the benefits of CST for dementia patients.

Cognitive Stimulation Improves Cognitive Function

Cognitive Stimulation Therapy has been shown to be effective in improving cognitive function and sort-term memory in people with dementia.

The program is designed to stimulate the brain and encourage participants to engage in activities that require cognitive processing, such as memory games, puzzles, word games, and discussions.

Research has shown that CST can improve memory, attention, and language skills in people with dementia, which can help them to maintain their independence and improve their quality of life.

Reduces Behavioral and Psychological Symptoms of Dementia

Behavioral and psychological symptoms of dementia (BPSD) are common among people with dementia. These symptoms include agitation, aggression, anxiety, depression, and social withdrawal. CST has been shown to reduce the severity of these symptoms, leading to improved well-being and quality of life for people with dementia. The program provides a structured and supportive environment that can help to reduce anxiety and increase socialization among participants.

CST Increases Socialization and Communication

Socialization and communication are important factors in improving the quality of life for people with dementia.

CST provides a structured environment that encourages socialization and communication among participants. Group discussions and activities provide opportunities for participants to interact with each other and engage in meaningful conversations. This can help to reduce social isolation and improve mood in people with dementia.

Supports Caregivers

CST is not just beneficial for people with dementia; it can also provide support for caregivers. Caregivers often experience high levels of stress and burnout, which can affect their ability to provide care for their loved ones.

CST provides a structured and supportive environment for people with dementia, which can help to reduce the burden on caregivers. In addition, caregivers can participate in the program, which can provide them with a much- needed break and support system.

In conclusion, Cognitive Stimulation Therapy is an effective non-pharmacological treatment for people living with dementia. It provides a structured and supportive environment that encourages socialization, communication, and cognitive stimulation. CST can improve cognitive function, reduce BPSD, and improve quality of life for people with dementia. It can also provide support for caregivers, which can help to reduce stress and burnout. If you are caring for someone with dementia, consider incorporating Cognitive Stimulation Therapy into their care plan.

A Mind to Care Game & Activity Therapy System provides CST Activities

The use of A Mind to Care Game & Activity system includes cognitive stimulation activities, such as word games, puzzles, ability to use pictures to discuss present or past events or other topics of interest, and more. Our game and activity therapy system may be a nice way to start with cognitive stimulation therapy with your loved one living with dementia.

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Adaptive Interaction and Nonverbal Communication in Dementia

Alzheimer's dementia communication cognitive non verbal

Adaptive Interaction and Dementia

Adaptive Interaction is a term that describes a method of communication that can help caregivers connect with people living with dementia who have lost the ability to communicate verbally. It is not difficult to learn and it can help to provide contact and engagement, even as the dementia advances.

A common effect of advancing dementia is that the ability to speak can be gradually diminished, until people retain little or no capacity for verbal communication, relying instead on sounds or movements. Despite this, research has shown that people living with advanced dementia do still retain the desire to communicate. (Ellis & Astell, 2006)

This is important, as often people who have lost the capacity for speech are regarded as being withdrawn and consequently shut off from the world around them. Being able to communicate without speech can reduce social isolation, improve quality of life and allow more opportunities for caregivers to engage with people living with advanced dementia.

Connection is Instinctive

Everyone is born with an instinctive desire to connect with other people. We see this in the way a baby will attempt to communicate, perhaps by smiling, crying, opening and closing their tiny hands, or making eye contact. As adults we recognize, enjoy, and respond to these actions, often encouraging them by imitating the sounds and gestures that the baby is making. By mirroring these actions we enable and encourage the baby to engage in social interaction, even before they are able to speak.

Social connection is something that we take for granted, but research indicates that it could also be a key skill that could help us to engage with people as they age and lose the ability to communicate verbally. The way we interact with babies may, in fact, hold the key to how we might communicate with people living with advanced dementia who have lost the capacity to speak.

Mirroring and Observation

Viewed through the lens of Adaptive Interaction, seemingly random actions by people living with advanced dementia, such as tapping, crying out, or repetitive bodily movements can be interpreted as possibly communicative, as opposed to random, or even problematic. It may be, in fact, that by copying, or mirroring the actions, and by paying attention to the mood of the person involved, the caregiver might find a way to communicate with someone unable to speak. More importantly, those individuals with dementia may once again, experience human connection and engagement with their loved ones.

The key principle of Adaptive Interaction is to view all behavior, such as sounds, movements and facial expressions, as potentially intentional attempts to communicate. This approach is primarily based on carefully looking for and observing actions such as sounds, movements, eye contact, gestures, etc., made by the nonverbal partner. These observations can then be used to try to develop an understanding of the ways in which the individual may be attempting to communicate. As these hypotheses are created, the observer can then experiment with reflecting back, or imitating (mirroring) these actions, which may develop into nonverbal conversations.

The actions in question can and will vary enormously from person to person. As mentioned above, examples may include tapping on a surface, touching hands, facial expressions, clapping, movement of feet, other bodily movements, smiling, or even crying out..

It is important to understand that Adaptive Interaction is not a panacea that will fit every person and every circumstance. Equally important for it to be beneficial, the caregiver must genuinely want to connect with the person involved, otherwise it could degenerate into simple mimicry, which would be harmful.

There is a lot of research and a lot of literature available on the subject of Adaptive Interaction and, for any caregivers struggling to communicate with someone who has lost the capacity to speak, it is potentially a valuable skill to investigate and learn.

If you need any assistance in connecting with additional information on the subject of Adaptive Interaction, contact us at customerservice@amindtocare.com and we will endeavor to connect you with material that will be helpful.

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How Colors can impact Dementia Care

dementia and colors alzheimers

Dementia and Colors

Could it really be true that different colors can actually have an impact on our moods? Interestingly, a lot of research* has been done over a number of years on the effect of different colors on the brain and human behavior, and it is increasingly apparent that different colors are interpreted differently by our brains and that they can actually have a subliminal impact on how we feel at any given moment. As a result, it does appear that careful choice and use of color can be helpful in improving quality of care for people living with dementia.

Contrast

The use of contrast in colors can be used to help define objects more clearly. So using a color with high contrast with its immediate background will draw attention to key features. In fact, the use of contrasting colors is very helpful in marking the edges of things; it can draw attention to furniture, or hazards that might cause someone to trip, or even to more easily find the toilet seat in an all-white bathroom.

Extending this principle into other areas, you might differentiate the colors that you choose for pillows, sheets and blankets, or to using dinner plates that are a different color to a tablecloth, for example. Other suggestions include using a contrasting wall color, so that it will be easier for someone to locate switches, sockets and handrails.

Red

There are studies that suggest that the color red can increase brain activity. It can also lead to a perception that a room is warm. Additionally, red can increase appetite and encourage eating when featured in plates and cups. It also figures that any dinnerware that is a different color to the food placed on it is helpful to someone living with dementia. Further research indicates that the color red can also promote participation; for example, red shoes might actually encourage someone to enjoy a walk. Oddly though, a  caregiver might want to avoid wearing red clothes, as the color red can also sometimes be perceived as intimidating

Green

The color green is associated with nature, and lighter shades of green can promote relaxation and calm. It is perceived as a restful color and can help to reduce central nervous activity. The use of green may also lead a room to be perceived as larger than it actually is.

Lime green, more specifically, has been shown to be effective for people living with Alzheimer’s or other forms of dementia, in providing visual cues to the location of doors to bathrooms, or bedrooms.

In addition, research has shown that the color green is one of the last colors that we lose the ability to see, so placing a piece of green tape on a cane, or a walker, or other items that people need to use every day, can be very useful. Not surprisingly, green is a good color for Caregivers to wear as it fosters feelings of engagement, relaxation and calm.

Purple

Purple is a color that has been shown to stimulate the imagination and also spirituality. Purple objects are often perceived as being valuable.

This belief dates back thousands of years as the physical resources needed to create a purple dye was very hard to come by; purple is uncommon in nature and was therefore very costly to create. As a result, only the elite could use purple dye. The association of the color purple with royalty and extravagance persists even today.

So, it might be a good idea to choose purple as a way to encourage someone to think of an object as desirable.

Yellow

The color yellow has been shown to increase feelings of happiness; people tend to smile more in yellow rooms, and individuals with dementia tend to stay longer in rooms that are painted yellow.

Blue

Blue is a color that promotes relaxation; blue rooms can reduce any feelings of confusion and increase concentration. Blue has been shown to be a restful color, with a calming effect. Research shows that using blue in the physical environment can actually lower blood pressure, and that blue rooms are seemingly cooler than rooms painted in shades of red or orange.

White

This may seem like stating the obvious, but white is a difficult color to see. As a result, an all-white room can appear to be circular to someone with dementia. It might be a good idea to paint an accent wall in a different color or create a colorful focal point somewhere in a white room.

Black

Also perhaps unsurprisingly, the color black can be associated with fear or sadness. As a result, if you wear black it might make it difficult to communicate with someone who has dementia. A black carpet would also be a poor choice, as it may appear like a large black hole to someone living with the condition. Conversely, a black mat in front of an external door might be a good disincentive.

Caring for Someone with Dementia and Colors Used in their Environment

As you are able to select colors of objects and surrounding of your loved one living with dementia, keep in mind the findings of studies on color and its impact on mood and perception.  Some ideas of how you might utilize colors: Walls could be painted green or blue. Use plates that are red.  Mark important doors, like bathrooms and  bedrooms with lime green tape, but paint the door going outside black so they are less likely to wander out accidentally.  Be sure steps or any other potential hazards are clear with a high contrast color to its immediate surroundings. Wear green. 

*Related articles:

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A sign of dementia is Rummaging – why does it happen and how do I cope with it?

a sign of dementia is rummaging

A Sign of Dementia: Rummaging

It is not uncommon to see someone living with dementia repeatedly rummaging through drawers and cupboards, often seemingly rearranging the contents, or emptying them out and then putting the contents back; they might then move to a different drawer or cupboard, and start the whole process again.

This behavior is known as rummaging, and it is something that does sometimes manifest itself as Alzheimer’s Disease, or other forms of dementia develop.

It is important for a caregiver to recognize rummaging as a sign of dementia, and to understand what it is and have a strategy to cope with it when it occurs. Otherwise, rummaging is an activity that can be extremely frustrating to watch because, frankly, it can create a real mess in a tidy room! In some cases, entire drawers may be emptied out, with the contents either strewn around the room, or perhaps hidden in different places. This can be challenging at the end of what may have already been a stressful day.

Why does it happen?

Rummaging may manifest itself as an expression of anxiety on the part of the person living with dementia; it may be that they are anxiously looking for a specific item that they believe they had placed in that drawer. If they can’t find it, they might jump to the conclusion that it has been stolen.

However, rummaging may also manifest itself as an enjoyable activity, where someone is simply looking through familiar items that bring comfort. It’s not uncommon for someone living with dementia to feel happier if they are surrounded by, or close to things that bring them comfort. So this sign of dementia can sometimes lead them to remove items from one location in order to hide them, or even hoard them somewhere else.

Equally, rummaging may be a manifestation of simple boredom; having a good “sort out” can be a way of finding something to do.

Rummaging is basically a coping mechanism — a way for the person living with dementia to cope with disorientation, or insecurity that is caused by the condition they are living with.

How do I cope with rummaging?

The first step is to take a breath and remember that it is the dementia that is causing the person you are caring for to rummage. It is absolutely not the case that they are deliberately doing this to bother you and add to your already heavy workload. Understanding and remembering this will help you to respond without arguments, which will avoid conflicts. Remember: rummaging is a symptom and sign of dementia. This in turn will lower the stress level for you both.

While the first instinct, particularly for someone with an orderly, tidy mindset, might be to put a stop to the rummaging. It is important to take a moment and try to understand why it is happening, and perhaps take steps instead to “manage” it rather than stop it. Particularly if, as mentioned above, when it is an activity that seems to be bringing comfort, or alleviating boredom for the person doing the rummaging.

Trying to stop the rummaging may increase levels of paranoia or agitation, raising stress levels and the potential for conflict. This is far less likely to happen if the rummaging is managed, rather than prohibited.

How to manage the rummaging activity:

  • Remove from all accessible drawers and cupboards any potentially harmful items. Make sure, for example, that things such as scissors, knives or needles have all been removed and stored somewhere that is either locked, or inaccessible. Remember that cleaning fluids may be confused with simple beverages and keep them somewhere safe.
  • If the rummaging activity does appear to be based on anxiety, try to find out what is driving that anxiety. Are they looking for a specific item which they believe might be in that drawer but does seem to have been misplaced? Some caregivers in this situation found a replacement item that looks the same or similar, which has solved the anxiety that had caused the rummaging.
  • Rummaging may extend from a drawer or cupboard to a refrigerator, so keep an eye on food items that may be past their sell-by date, or raw meats. Either remove them or try to make them inaccessible.
  • Take steps to remove any valuable or important items – cash, jewelry, keys, passports or credit cards and keep them somewhere inaccessible.
  • Consider creating a Rummaging Box, or Drawer, that is filled with familiar items, or items that you know may trigger happy memories, such as family photographs, or items that are familiar and special, such as a purse, clothes, or scarf or other mementos. Going though these things can provide a positive experience and a connection to good memories, which can increase feelings of comfort or security.
  • Keep trash cans out of sight, if possible, as someone rummaging may not be able to discern the difference between them and a drawer or cupboard. It is also a good idea to check the contents of the trash can before disposal, to make sure that no items have been hidden or placed in there that should not be thrown away.
  • Rummaging can take place anywhere in the house so try to keep restricted access to certain rooms.

In summary, rummaging is a sign of dementia and Alzheimer’s.  A patient and well thought out approach to rummaging can address its challenges and even turn it into a worthwhile and fulfilling activity.

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Dealing with Sundowning

sundowning

What is Sundowning?

Dementia is a general term for any condition encompassing memory loss, mental confusion, mood changes and other cognitive impairment issues that increasingly have a detrimental effect upon the ability of the person living with the condition to maintain a normal daily life. Within the scope of dementia, Alzheimer’s disease accounts for possibly up to 80 percent of all dementia cases.

Every person and every case is unique, but some symptoms will be common across many people living with the condition, and one of them is known as Sundowners Syndrome, or Sundowning.

Sundowning is the term given for a situation where a person living with Alzheimer’s disease and other types of dementia may start to experience a worsening of symptoms as the day begins to draw to a close and nightfall approaches.

At present, there is no definitive explanation as to why sundowning occurs, but it is believed that it affects something like 20% of all Alzheimer’s patients.

The progress of Sundowners Snydrome often appears to be in step with the progression of the Alzheimer’s disease itself. As the dementia worsens, so often does the recurrence and severity of the sundowning.

There is still a degree of mystery and uncertainty as to what exactly causes sundowning. There are a number of scientific and medical theories as to what may cause the phenomenon, and there are also believed to be certain “triggers,’ which can either cause or exacerbate it, but it is certainly something that Caregivers should be aware of and ready to try and manage, as far as possible.

The leading theory is that, as the condition of the Alzheimer’s patient worsens, the disease causes neuro-chemical changes in the brain that start to affect the internal biological “clock” of the patient; this can interfere with the part of the brain that would normally signal to a healthy person that it is time to wake up or go to sleep.

When someone experiences sundowning, it does not create any new symptoms, but rather it tends to exacerbate certain of the existing symptoms that the person has already been experiencing, particularly symptoms that adversely affect behavioral characteristics, rendering the person increasingly agitated, irritated, reckless and more and more difficult to manage.

Caregivers have reported that some people experiencing sundowning can become increasingly angry, irritated, anxious, agitated, paranoid and depressed; some even can become violent, hallucinatory, or overly emotional or upset and unable to sleep. Sleep deprivation itself can then contribute to a vicious cycle that can trigger further sundowning episodes.

Sundowning can start to occur from late afternoon and continue until late at night, and this can be especially challenging for a caregiver who may be already exhausted. It then tends to fade and the patient will return to a more normal state.

Common Sundowning Triggers

Sundowning can also potentially be triggered by certain situations or circumstances, and these could include:

  • Fluctuations in light levels – both low light and too much light have been found to be a trigger
  • Depression
  • Boredom
  • Lack of sleep
  • Hunger
  • Pain
  • Raised stress levels
  • Social isolation
  • Infection, such as a urinary tract infection

There is no cure yet for Alzheimer’s disease and, as sundowning is a known symptom that may manifest itself as the disease progresses, there is nothing that can be done to eliminate the phenomenon.

All a caregiver can do is be aware of the potential triggers and avoid them as far as possible, and to be ready to deploy strategies that have in some cases been seen to help manage the symptoms.

Management Strategies:

  1. Try to remain patient and calm

This is perhaps the most difficult of all things to implement, as dementia patients can often be extremely difficult to manage. In such circumstances, patience can be extremely elusive, but a raised voice, or sudden movement or changes in circumstances can worsen the situation

  1. Are there any immediate needs that can be met?

As mentioned above, feelings of hunger, thirst, lack of sleep, or pain, can potentially trigger a sundowning episode.

  1. Create a peaceful and tranquil setting as the day moves into the afternoon

Perhaps consider drawing the curtains early – this will reduce any lowering of light levels in the room as the outside light fades, as this has been noted as a potential sundowning trigger. A tranquil environment, with no distractions also can help, as will reducing noise, or the number of people in the room.

  1. Try to keep the patient active during the day

If possible, try to engage the person you are caring for with activities that will occupy their attention. One of the challenges in caring for someone with dementia is that they are often likely to nap during the day; this makes it harder for them to sleep at night. Board games, puzzles, craft exercises, even watching a favorite movie or TV show can all help.

A Mind to Care was born from a desire to make simple games and activities available to caregivers seeking to engage and retain the attention of people in their care. Many studies have confirmed that activities that engage the mind can significantly increase general well being.

Regular physical exercise can also help.

  1. Diet

Pay close attention to diet. Try to avoid caffeine or high sugar intake, particularly in the afternoon and strive where possible to maintain a good nutritional diet. Avoid alcohol.

  1. Stay Secure

One adverse effect of sundowning is that the patient may become prone to getting up at night, pacing the room, or trying to leave the home. It may be wise to fit locks on doors and windows, and perhaps a gate to prevent access to stairs, to avoid an accident or the patient wandering away and getting lost.

  1. Get some air

A brief walk or a short sit outside can be beneficial, as it is believed that exposure to daylight can help the body to reset its internal clock.

Other Resources about Sundowning are Available

There are many online resources providing advice and support on this and other issues facing caregivers; if you need help finding advice, let us know and we will steer you in the right direction.

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Taking Care of the Caregiver Benefits Both

The well-being of the family caregiver can have a direct impact on the quality of life of the dementia patient.

Family Caregiver –  Labor of Love

It is the hope of most folks to be in their own home for as long as possible. Home caregivers (usually family members) make this possible longer for people who suffer from dementia or other neurological or physiological conditions by helping their loved ones adapt to and cope with limitations in ability, mobility, communication and cognition.

The caregiver is constantly working to stabilize or lessen the progression of disorders with exercise, nutrition, activity, hygiene and generally some mix of medicinal schedules. It can be a very hard and often heartbreaking job, yet so many take it on as a labor of love.

A Healthy Caregiver Benefits Both Themselves and the Patient

Studies have shown that “the health and general well-being” of a family caregiver can have a direct impact on the quality of life and success of therapy for dementia patients in their care.

Additionally, research indicates that dementia patients have higher rates of behavioral symptoms and mortality when cared for by carers who are stressed, use emotion-based coping (e.g., wishing that the disease would go away), or negative communication strategies.

Effective Coping

If you are a family caregiver, finding an effective coping mechanism for both you and the loved one you are caring for are important. Everyone’s health and well-being are interconnected and interdependent.

Happily, there are many resources for the family caregiver to call on to help with the daunting and difficult task of providing home care for their loved one. Understanding the changing needs and communication strategies of their charges is an important factor in successfully managing a home care situation.

One such sources was provided by the Lewy Body Dementia association, found online here.  This document helps to set expectations about caring for people with dementia, and also offers a helpful section titled “Care for the Caregiver” that includes common sense suggestions for maintaining personal equilibrium in the face of such demanding and difficult work.

Use tools and resources to make caregiving easier and pleasant for you and your loved one. As possible, share in activities you both enjoy like games, puzzles, and looking at old photographs. Our Game & Activity Therapy System is made just for this – to help engage those with Alzheimer’s, dementia or other cognitive impairment in a positive activity.

How Do You  Know You Need Help?

Caregivers are less likely to prioritize themselves and may not spend time on preventive health services such as checkups. They are therefore at higher risk of health issues, even increased risk of premature death. 

Do you have any of these signs?

  • insomnia
  • exhaustion
  • ill-tempered
  • feeling of being sad
  • loss on interest in hobbies you once enjoyed
  • skipping personal care tasks
  • overuse of alcohol or drugs

The National Institute of Aging provides suggestions for caregivers to care for themselves.

Get Support

Remember, it is NOT selfish to take care of yourself when you are a caregiver. It’s important for you to do so for both your own well-being, as well as the person you are caring for. 

Join a caregiver support group. A support group can help you share your feelings in a safe environment among those who can understand what you might be feeling. 

Our Caring for the Caregiver is a 52-week paperback journal, designed to cultivate self-reflection, gratitude, well-being, and stress management for caregivers.

Utilizing a trusted in-home care agency can provided needed respite is another option.

Many other sources for information and helpful resources for the caregiver can be found online, with many different organizations providing helpful resources for home caregiving needs.

We’re Here to Help

A Mind to Care was created to contribute quality of life to others.  So if you need help with finding and connecting with useful resources, drop us an email at customerservice@amindtocare.com and we’ll be happy to pass on any information we have available.