What are challenging behaviours?
My loved ones becomes very restless at night. He will be searching for his lost wallet or cards for 1-2 hour in the night. Wonder around in the house (Sundowning)
Repetitive questions that require my attention all the time
Lying in bed and not motivated to wake up from the bed
Asking to go home when he is already at home
Refused to go for day care actitivities
As the dementia progresses, I realised that our loved ones will ask the same questions repeatedly. It is because he would have forgotten that he has already asked that question and thought that his questions were not answered. If we are the main caregiver and the correct response is to answer the questions patiently and not to get irritated with such repetitive behaviour.
Since 2019, I have enrolled my mother upon the advice of my neurologist into day care centre twice a week. It was a very difficult and emotionally draining process to convince her to go to the day care. It took her a year to be acquainted with the workers and volunteers there and there were times when she would throw her tantrums and refused to go to the centre. It took much coaxing and "dangling of carrots and incentives" - that there are many fun activities like singing, colouring and free lunches.
The benefits of the engagements at the day care are: Her energy is channeled to meaningful activities, exercises to improve flexibility and hand grips, rehabilitation to strengthen her legs to walk more than 100 meters, social circle is expanded as she befriends new residents at the day centre. She also became the "class monitor" and flag any dangers to the staff at the centre. For example, one demented resident was so hungry that she ate the beads that she was playing with and my mother had to immediately alert the staff who successfully took the bead out of the resident's mouth. The staff immediately attended to the resident's hunger by providing milo and bread. The resident became content and no longer engage in dangerous behaviour like putting the beads in her mouth.
There are many reasons for restlessness. One of the reason I noticed during the day my mother do not attend day care centre was boredom. She was looking for things to do around the house. She would be searching for things in her bedroom, falling asleep on the sofa in the daytime and in the night time, she would be unable to fall asleep. When her sleep is poor at night, it will then go into a vicious cycle where she will nap in the daytime to catch up on poor sleep and once again, she will not be sleeping a lot at night, wondering in the kitchen, making drinks and waking up the rest of the family through the "clanking" of the utensils. However, when she comes home from the day care centre, her energy would be depleted there and after dinner, she would be getting herself ready to sleep. It is noticed that she has better sleep and do not wake up so far at night. For those whose loved ones cannot be sent to a day care centre due to bed bound (not accepted by day care) or due to financial constraints, the caregiver or the foreign domestic worker (FDW) would need to actively engage them with meaningful activities so that they will not be able to take long naps in the day time that will cause them to have difficulty sleeping at night. This, however, would have a huge emotional toll and is physically draining if the caregivers or FDW has other responsibilities in the house like cooking the meals and carrying out housework as well.
In my own situation, I find that even her visit to day care thrice a week is helpful to help her reduce such restlessness and less incidence of sundowning.
One of the caregiver in the support group meeting that I attended this week, shared that her mother is asking to go home despite already in her own home. Our natural instinct is to correct her and tell her that she is already home. However, as the dementia progresses, the loved ones may be living in her own world. He may be confused and could not longer recognise his own house and may mistake us for someone else. Initially, we may feel very disturbed and sad that our loved ones would progress to this state. However, as we get over this grief and loss of our loved ones' mental capacity, we can response gently to him that : Let us stay here for a while. We shall go home tomorrow morning.
If our loved ones is still lucid, we can discuss benefits of medication taking and relate the benefits to them. For example, if you go to day care and strengthen your leg strength and balance, you can continue to be independent and be able to travel to your favourite granddaughter's house via public transport. If you take this medication to control your high blood pressure, you will be able to stay healthy and reduce the risk of a serious stroke which may leave you bed bound.
However, there are incidences where medications are being prescribed for major depression or treating behavioural that can cause harm to our loved ones. Our loved ones may be depressed and may cause self harm. Your doctor may prescribe low dose antidepressants to elevate the moods of your loved ones. Antidepressants when prescribed should be taken as instructed and should not be stopped without the advise of your doctor. This is important as abrupt stopping of such medications may cause medication discontinuation syndrome especially when such medications are being used for more than 4 to 6 weeks continuously.
Medications to address the challenging behaviours should be prescribed after shared decisions with the caregivers and the healthcare professionals. During shared decision making, the benefits and side effects of the medications will be discussed. Goals of care with the use of medications should also be aligned with the caregivers and healthcare professional.
Last but not least, if there are many challenging behaviour that is not addressed here and is most likely to cause poor quality of life for the person living with dementia and its caregivers, do seek help from your healthcare professionals.
It is important that thriving caregivers continue to provide adequate self care for ourselves so that we will be able to manage these challenging behavioural with non pharmacological measures, engaging them in meaningful activities. If we are emotionally depleted and tired, our loved ones will sense our impatience and may response in a challenging manner because they may perceive our anxiety and frustration.
May you continue to persevere in being a thriving caregiver.
Copyright LHN. This blog expresses the personal thoughts of the writer and do not replace professional advice in your caregiving journey.
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