Why is he doing this? Why is she acting this way? We always wonder why they are acting out or being disruptive, but we don’t always think about what is really going on. What is really going on is that something is bothering them and they cannot tell you what it is. You have to put on your detective hat. I promise you that they are not doing this on purpose.

September 21, 2022

When people with dementia can’t tell you what is wrong

It is hard to deal with a person that cannot tell you that they are hurting, uncomfortable, or scared. They do things that don’t make any sense to us. But, remember you are in dementia land. They have less and less control over their emotions.

Aggression in dementia can become scary and abusive. Aggression can become physical. It may also come out as cursing, spitting, or being verbally abusive to the care partner or helper. The aggressive behavior is thought to be the way that the person with dementia  shows anger, fear or frustration.

Overboard reactions include screaming, shouting, making crazy accusations, and becoming agitated or very stubborn. They may also have uncontrolled laughing or crying. Possibly due to misunderstandings/miscommunications or even an underlying illness.

Change in sexual behaviors. The person with dementia no longer knows what to do with their sexual desire or how to address it appropriately. There may be a diminished interest in sex or there may be an increased interest in sex. They may remove their clothes, make sexual advances toward others, fondle themselves in public, or mistake another person for their partner.

Repetitive behaviors include asking the same question over and over and over, pacing, undoing something that you have just done, or word repeating. Give them something to do.

Wandering or leaving. Maybe they are “trying to go home,” or “they are going to work.” You may have to hide “exit cues” or “trigger items,” such as keys, shoes, jackets, purses, or hats. Try to engage with talking or reminiscing while distracting them from leaving.

Sleep disruptions. Dementia affects sleep patterns. Have the doctor rule out other possible causes. Keep them active and on a schedule during the day. They need physical exercise (walking 30 -45 minutes each day). Is the sleeping environment dark, and quiet? Is the temperature in the bedroom comfortable? Make sure they have sunlight during the day and even if they can’t go outside a lot, they can see the sunlight through the windows.

Delusions and Hallucinations: False beliefs, paranoia, and hallucinations may occur. Sometimes, the hallucinations are pleasant and sometimes they are not. Strong emotional memories from their past may recur. They will feel as though they are experiencing them in real time, all over again. If they are not bothered by the hallucination, then leave it be. If they are distressed, talk with the doctor to rule out other causes or to change/update medications. You can acknowledge their experience with a matter-of-fact tone without agreeing or disagreeing with them. You could say something like, “That is interesting.”, “I don’t see that.”, or acknowledge what they have said and move on to another topic.

I saw this article from Better Health and would like to share it with you.

https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/dementia-behaviour-changes

Sleeping problems in dementia

Problems with sleeping are common for people with dementia. Some people sleep during the day and are awake and restless at night. Some are no longer able to tell the difference between night and day, while others are simply not as active as they used to be and so need less sleep.

Problems with sleeping or late evening agitation are often a stage in dementia that eventually passes. Many people with dementia sleep more during the later stages of the illness.

Sleep problems are among the most difficult dementia symptoms for carers. Families and carers must be able to get adequate sleep themselves. Plan regular periods of rest and regular breaks for yourself, as well as for the person with dementia.

Medical possible causes of sleeping problems in dementia

Sleeping problems may be caused by physiological or medical causes including:

    • brain damage (caused by the dementia) that affects the ‘biological clock’ in the brain that directs our sleep patterns

    • illness such as angina, congestive heart failure, diabetes or ulcers

    • pain caused by conditions such as arthritis

    • urinary tract infections that cause a frequent need to urinate

    • leg crampsor ‘restless legs’, which can indicate a metabolic problem

    • depressionthat causes early morning wakening and an inability to get back to sleep

    • side effects of medication, such as antidepressants and diuretics

    • snoring and sleep apnoea

    • ageing that causes sleep patterns to change so that some people need more sleep and some need less.

Things you can try include:

    • Discuss with the doctor the possibility of stopping or changing diuretic medication (which makes a person urinate), because this may be contributing to the problem.

    • Arrange a medical check-up to identify and treat physical symptoms.

    • Treat pain with an analgesic (pain-relieving medication) at bedtime if the doctor agrees.

    • Discuss with the doctor whether sedatives may be contributing to the problem.

    • Ask the doctor whether an assessment for depression may be necessary.

    • Ask the doctor about possible side effects of medication.

    • In some situations, it may be necessary to consider discussing with the doctor the appropriateness of either using tranquillising medication or sleeping medication. Sleeping medication may be helpful in the short term to establish a better sleep cycle, but both types of medication can have negative effects, such as increased confusion.

Environmental causes of sleeping problems in dementia

The environment of the person with dementia can cause sleeping problems in a number of ways including:

    • The bedroom may be too hot or too cold.

    • Poor lighting may cause the person to become disoriented.

    • The person may not be able to find the bathroom.

    • Changes in the environment, such as moving to a new home or having to be hospitalised, can cause disorientation and confusion.

Things you can try include:

    • Keep the environment as consistent as possible.

    • Check whether the person is too hot or cold when they wake up, because dementia can affect the body’s internal thermostat.

    • Provide adequate lighting if shadows, glare or poor lighting are contributing to agitation and hallucinations.

    • Move the mirror in the bedroom if the person becomes confused when they do not recognise their own reflection or the reflection of others in the room.

    • Install night-lights that might help cut down on confusion at night and may help the person to find the bathroom.

    • Place a commode next to the bed if finding the bathroom is a problem.

    • Make sure the bed and bedroom are comfortable and familiar, because familiar objects may help to orient the person.

    • Avoid having daytime clothing in view at night, because this may make the person think it is time to get up.

    • Make sure that the person is getting enough exercise – try taking one or two walks each day.

Other causes of sleeping problems in dementia

Other causes of sleeping problems may include:

    • going to bed too early

    • sleeping too much during the day

    • overtiredness, causing tenseness and inability to fall asleep

    • not enough exercise, so the person does not feel tired

    • too much caffeine or alcohol

    • feeling hungry

    • agitation following an upsetting situation

    • disturbing dreams.

Managing sleeping problems with food and drink

Some suggestions include:

    • Cut down on caffeine (coffee, cola, tea, chocolate) during the day and cut them out altogether after 5 pm.

    • Cut down on alcohol and discuss the effects of alcohol and medication with the doctor.

    • If you think the person may be hungry at night, try a light snack just before bed or when they wake up during the night.

    • Herbal teas and warm milk may be helpful.

Managing sleeping problems through daily routine

Some suggestions include:

    • Try not to do any tasks in the late afternoon that may be upsetting to the person.

    • If the person refuses to go to bed, try offering alternatives such as sleeping on the sofa.

    • In some situations, it may be necessary to consider discussing the appropriateness of either using sedative medication or sleeping medication with the doctor. If the person wanders at night, consider allowing this, but check that the house is safe.

    • Try a back rub before bed or during a wakeful period.

    • Try a radio beside the bed that softly plays music.

    • Gently remind the person that it is the evening and time for sleep.

Hoarding in dementia

FYI – People with dementia may often appear driven to search for something that they believe is missing and to hoard things for safekeeping.

Some causes of hoarding behaviours include:

    • isolation – when a person with dementia is left alone or feels neglected, they may focus completely on themselves. The need to hoard is a common response

    • memories of the past – events in the present can trigger memories of the past, such as living with brothers and sisters who took their things, or living through the Depression or a war with a young family to feed

    • loss – people with dementia continually lose parts of their lives. Losing friends, family, a meaningful role in life, their income and a reliable memory can increase a person’s need to hoard

    • fear – a fear of being robbed is another common experience. The person may hide something precious, forget where it has been hidden and then blame someone for stealing it.

Managing hoarding

Things that you can do to help manage hoarding behaviour in dementia include:

    • Learn the person’s usual hiding places and check these first for missing items.

    • Provide a drawer full of odds and ends for the person to sort out, as this can satisfy the need to be busy.

    • Make sure the person can find their way about – an inability to recognise the environment may be adding to the problem of hoarding.

Repetitive behaviour in dementia

People with dementia may say or ask things repeatedly. They may also become very clinging and shadow the person caring for them, even following them to the toilet. These behaviours can be very upsetting and irritating for families and carers.

Managing repetitive behaviour

Things that you can do to help manage repetitive behaviour in dementia include:

    • If an explanation doesn’t help, distraction sometimes works. A walk, food or doing a favourite activity might help.

    • It may help to acknowledge the feeling expressed. For example, ‘What am I doing today?’ may mean that the person is feeling lost and uncertain, and a response to this feeling might help.

    • Do not remind the person that they have already asked the question.

    • Repetitive movements may be reduced by giving the person something else to do with their hands, such as a soft ball to squeeze or clothes to fold.

Wandering in dementia

Wandering is quite common among people with dementia and can be very worrying for those concerned for their safety and wellbeing. The person’s failing memory and declining ability to communicate may make it impossible for them to remember or explain the reason they wandered.

FYI – Develop an action plan for when a person with dementia wanders, such as noting the clothing they were wearing, and contacting neighbours and the police.

Reasons that a person with dementia might wander include:

    • changed environment

    • loss of memory

    • excess energy

    • searching for the past

    • expressing boredom

    • confusing night with day

    • continuing a long-held habit

    • agitation

    • discomfort or pain

    • believing they have a job to perform.

Managing wandering

Things that you can do to help manage wandering in dementia include:

    • Get a physical check-up for the person to help identify whether illness, pain or discomfort has triggered the wandering.

    • Discuss the side effects of medication with the doctor – try to avoid medication that may increase confusion, and cause drowsiness and possibly incontinence.

    • Consider the psychological causes of wandering to try to determine if the person is anxious, depressed or frightened.

    • Make sure that the person carries some form of identification that includes their current address, if travelling

    • Use identification cards available from Alzheimer’s Australia.

Sundowning in dementia

People with dementia may become more confused, restless or insecure late in the afternoon or early evening. This is known as sundowning and these behaviour changes can become worse after a move or a change in routine.

The person with dementia may become more demanding, restless, upset, suspicious, disoriented and even see, hear or believe things that aren’t real, especially at night. Attention span and concentration can become even more limited. Some people may become more impulsive, responding to their own ideas of reality, and this may place them at risk.

Visit the doctor for a check-up and a review of medication. There are a number of physical and environmental changes you can make to restrict stimulating activities to the morning and promote relaxation in the afternoon and evening.

When you are dealing with all kinds of behaviors, you will need a way to calm your own frustration. Sometimes, you need to walk away and take a few minutes to compose your own thoughts and settle down. Is what they are doing hazardous or frustrating and aggravating? Unless it is dangerous or hazardous, leave them alone.

Know your own warning signs of frustration:

    • Shortness of breath

    • Knot in the throat

    • Stomach cramps

    • Chest pains

    • Headache

    • Compulsive eating

    • Excessive alcohol consumption

    • Increased smoking

    • Lack of patience

    • Desire to strike out

If you don’t deal with your own frustrations, anger and resentment are not far behind.

Pat