Category: Dementia Common Questions

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Agitation

Although it has perhaps not received the attention that it deserves, the issue of Agitation is a common symptom in people living with dementia, and 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 carers, and the effects can have a 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:

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 and 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.


Medication
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.


Environmental triggers
Agitation may also be triggered or exacerbated by environmental conditions, for example loud noise, 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:https://amindtocare.com/caregiver-tips/are-different-colors-relevant-to-dementia/ )


Broken 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. 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 ( https://amindtocare.com/benefits/)


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

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Adaptive Interaction and Nonverbal Communication in
Dementia

Alzheimer's dementia communication cognitive non verbal

Adaptive Interaction is a term that describes a method of communication that can help carers 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.

Everyone is born with an instinctive desire to connect with other people. We see this instinct in the way a baby will attempt to communicate, perhaps by smiling, crying, opening and closing their tiny hands, or making eye contact and, 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. This 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.

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 potentially 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 carer might find a way to communicate with someone unable to speak. Perhaps more importantly, those individuals with dementia can, 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 a potentially intentional attempt to communicate. This approach is based primarily on carefully looking for and observing such actions, such as sounds, movements, eye contact, gestures, etc, made by the nonverbal partner, and to use these observations to try to develop an understanding of the ways in which the individual may be attempting to communicate.

As these potential attempts to communicate are observed, the observer can then experiment with reflecting back, or imitating (mirroring) these actions, which can then potentially 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, for it to be beneficial, the carer 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 carers 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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What is Rummaging – why does it happen and how do I cope with it?

What is it?

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 be aware of it, to understand what it is and perhaps have a strategy to cope with it when it occurs as, otherwise, it 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 and 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, and this 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 it?

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, which in turn will lower the stress level.

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, 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, something that is far less likely to happen if the rummaging is managed, rather than prohibited

Managing the activity would include things such as:

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 have 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, and 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 perhaps try to keep restricted access to certain rooms.

In summary, 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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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 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.

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. These would include:

  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 carers 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, and 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.

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.