Dementia expert Karen Tyrell offers answers to www.carp.ca visitors for their situation-specific questions. Karen is Dementia Consultant offering to point you in the right direction, giving you quick insight and personalized answers.
Do you have a specific question relating to dementia that you need answered? Please submit your questions by email to: [email protected]
May 2014
1. Planning ahead.
Dear Dementia Solutions: I think my sister is starting to get dementia. We are not sure. What should we do first? ~ Forward Thinking Sister
DearForward Thinking Sister:
My first question is always…has she been seen by a doctor? Sometimes people show signs of dementia but it is not dementia. It could be something that can be treated and she could go back to her normal self. Depression, Thyroid issues, Vitamin deficiencies and even pain can all bring on symptoms of dementia. (There are many more conditions) Best to have this investigated.
Secondly, once we know what we are dealing with…education about the condition is vital. Learning all you can will help you to help her. Thirdly, if you are dealing with a progressive dementia when she is ready it would be in everyone’s best interest to start planning ahead once. Doing this planning now will not only help her to feel more at ease if things do change (because waiting may prevent her from having the ability to voice her wishes if/when she is deemed incompetent.) It will also help to reduce the stress of her family and friends should things change for her as they will not have to make all the decisions on their own.
The planning I am referring to is encouraging her to ensure all her legal documentation is in order such as appointing a Power of Attorney whom she trusts to handle any financial decisions and paying her bills; writing down her wishes into an Advance Care Directives document (also commonly known as a living will); appointing someone she trusts to look after her personal care decisions when she is no longer able; and finally the drawing up of a legal will.
2. Arriving too early for appointments
Dear Dementia Solutions: My Mother-in-law has been to the memory clinic and advised that she has mild Dementia. I was just wondering if anyone else’s relative/friend had gone through this – arriving too early for appointments? She sometimes wants to arrive 2-3 hours ahead of time. She seems so anxious to get there. Is this a usual behaviour that a person with dementia goes through? ~Appointment Anxiety
Dear Appointment Anxiety:
Yes, it is common for people diagnosed with dementia to have anxieties around getting to appointments on time. It is often related to the brain starting to show difficulties with judging time and place. In some cases, people are no longer able to tell time. So to be on the safe side, they just leave early to ensure they get there so they don’t miss the appointment. As the judging of time becomes more difficult, I have seen cases where someone starts to mix up the P.M. and A.M. For example someone may wake up early and think it is 3pm when in fact it is only 3am and will get dressed to make sure they make it to their friends home in time for their supper date. When a person starts to show confusion with time, it is a good idea to start to be on the lookout for other evidence of other strange behaviours including safety concerns such as getting proper nutrition and/or driving etc.
3. Considering Medications?
Dear Dementia Solutions: My husband has Dementia. He takes no medication should he be taking something? ~Curious about meds
Dear Curious about Meds:
Before making a medication decision, you must know what you’re medicating. In the case of your husband, the cause of his dementia must first be pinpointed.
Dementia is a syndrome, a set of symptoms which can include poor memory, impaired thinking and judgement, problems communicating, and changes in personality. Poor memory is displayed as a difficulty recalling simple information. Trouble with straightforward tasks can signal impaired thinking. Faulty judgement can be expressed by saying inappropriate things in public or taking on unmanageable tasks, while communication difficulties may present themselves by your husband having a hard time understanding you or expressing himself. Personality changes can include expressions of frustration, refusing to go out with friends, or frequent outbursts.
Symptoms offer clues in finding the cause of dementia. If depression is at play, then consult with a doctor on medical and non-medical treatment options. If the culprit is a vitamin deficiency, increasing the particular vitamin(s) may reverse symptoms. If Alzheimers disease is the cause, a degenerative brain disease, then a doctor can recommend whether a medication can be prescribed to aid in slowing the disease process or addressing some of the symptoms.
Remember, however, that medications are only one option. Effective non-drug options, such as a higher fat diet, showing positive results in reducing or reversing symptoms of Alzheimers disease do exist (a popular book to read on this subject is Grain Brain by David Perlmutter MD.) Putting your detective hat on to get to at the heart of the cause will help you decide which options will work best.
Do you have a specific question relating to dementia that you need answered? Please submit your questions by email to: [email protected]
Karen Tyrell CDP, CPCA is a Dementia Consultant & Educator for Personalized Dementia Solutions (www.dementiasolutions.ca) and the author of the book Cracking the Dementia Code – Creative Solutions to Cope with Changed Behaviours. She offers her expertise on dementia care through speaking engagements, workshops and by working one-on-one with families and caregivers.
April 2014
Doing this on purpose?
Dear Dementia Solutions:
Im my mothers caregiver. Shes 81 years old. Sometimes she remembers what somebody told her a long time ago but doesn’t remember what I told her recently. She also creates her own story about what I told her, that doesn’t have any connection to reality. I cannot distinguish whether shes manipulating me or whether shes sick and needs help.
How do I identify the first symptoms of dementia and where can I get help when its needed?~ Concerned Daughter
DEAR CONCERNED DAUGHTER:
If you’re noticing other symptoms in your mother on a daily basis, such as impaired judgement and thinking or changes in her personality and communication abilities, then it would be a good idea to visit the doctor for a good check-up. If these symptoms are present, then her behaviours may be a result of dementia. To investigate, the doctor will likely do a blood test, urine test, scan(s) and a cognitive test, etc. To learn more about the 10 warning signs of Alzheimers disease, visit is the Alzheimer Society of Canada www.Alzheimer.ca.
Seeing the past through a clearer lens than the present is common for those with Alzheimers disease and some other related dementias (ADRD). Its also common for caregivers to be confused as to what behaviours are deliberate or caused by an illness. You are certainly not alone!
The hippocampus, the brains memory & learning centre, is often the first to deteriorate for those with ADRD. To understand dementias impact on memory, I like to use the Memory Onion Analogy. Picture a large onion. The outer layers represent our latest memories and knowledge, and closer to the core of the onion lie our oldest memories and knowledge from childhood.
A person with dementia can revert backwards through layers of memory. In the early to middle stages of a degenerative dementia, one may not remember what they ate for lunch ten minutes ago, but they will recall their school days vividly. In my book Cracking the Dementia Code on page 60, you will find more details about the Memory Onion Analogy. Understanding your mothers memory changes and gaining clarity on her condition are very important first steps in helping her and helping you in your role as a caregiver.
Dizziness, dementia and denial
Dear Dementia Solutions:
My father, who’s in his late 80s, cares for my mother who has dementia. He occasionally gets dizzy, for no apparent reason at all, and has to hurry back home until it passes. This has happened while hes been out driving with my mother, while at a plaza, while shopping, etc. The last time it happened they were only about 10 minutes away from their home. When he advised me of this, I told him that he should, from now on, stick close to home so he doesn’t have to drive back a long way while dizzy.
As the primary caregiver to my mother, my father is quick to do things that calm her when she gets agitated, and to keep her generally happy. I’m afraid that if my father experiences a bout of dizziness while they’re a long way from home, my mother might insist on driving back home, which she is in no condition to do. My father may be unable to stop her because his own discretion is becoming diminished, and his main objective is keeping her happy. How do I impress upon him that he should under no circumstance be farther than about 10 minutes from home? I’m afraid for them, and for anyone else on the road. ~A.K.A. Afraid
DEAR AFRAID:
Theres definitely a reason for your fathers dizzy spells. A visit to the doctor will offer a better understanding of his condition. Whether its due to blood pressure, blood sugar, stress or vertigo, uncovering the reason could allow your father to take action to mitigate his bouts of dizziness through medication or other treatments. As part of the investigative process, ask key questions: How often does your father experience dizziness? Does it seem to be getting worse by occurring more frequently?
Your father certainly cares deeply for your mother in trying to keep her happy. However, you’re rightly concerned because keeping her satisfied shouldn’t be at the cost of compromising safety. If you feel he would allow your mother to drive, despite her cognitive impairment and your strong warnings against it, in order to make her happy it sounds to me that it would be appropriate to arrange a testing of his cognitive abilities while he is visiting with the doctor. Poor judgement is one of the symptoms of dementia, and dizziness can also have an effect on cognition. He may not have a serious condition, but its better to know either way.
I appreciate your rationale for impressing a 10 minute away rule, however problems could arise even if your parents are only 2 minutes away from home. Something to note; Impressing rules upon a person who has the symptoms of dementia is not always effective. If safety is a concern for these outings, then maybe you may want to consider having someone accompany your parents until the reason for your fathers dizziness is determined and/or addressed?
Many find it difficult to accept the reality of our aging parents condition(s). Change is not always easy. Investigating the reasons for behaviours will free you to make the most appropriate decisions to keep both your parents happy and safe. Keep me posted!
Doing whatever works!
Dear Dementia Solutions:
I’m around my mum, who has dementia, 24/7, and I noticed myself getting increasingly cross with her, which raised both of our stress levels. Realizing the negative effects, Ive now started ignoring her and it makes our interactions calmer. Is this the right approach?~ Stressed out Daughter
Dear Stressed out Daughter:
When it comes to dementia care, we really need to do whatever works! Caregivers are immersed in stressful situations so you shouldn’t feel guilty about your actions in trying to keep the calm. Having said this, we also need to ensure were not causing any unsafe situations of neglect in our attempts to maintain a peaceful environment. When stress rears its head, perhaps it may be time to increase your me time and/or seek more help.
Do you have a specific question relating to dementia that you need answered? Please submit your questions by email to: [email protected]
Karen Tyrell CDP, CPCA is a Dementia Consultant & Educator for Personalized Dementia Solutions (www.dementiasolutions.ca) and the author of the book Cracking the Dementia Code – Creative Solutions to Cope with Changed Behaviours. She offers her expertise on dementia care through speaking engagements, workshops and by working one-on-one with families and caregivers.
March 2014
When repeated stories cause annoyance.
Dear Dementia Solutions:
My friend, who has dementia, is continually repeating the same stories over and over again. Frankly, I’m getting tired of hearing them and Im not finding our visits fun anymore. When she starts telling a story, do I stop her by letting her know that shes repeating herself or should I keep listening? What would you suggest I do? –Unsure Friend
Dear Unsure Friend:
Hearing the same story multiple times wouldn’t be enjoyable for anyone. The reality is that this repetition is common with conditions that affect a persons memory. When memory is affected by dementia, the older memories tend to be more vivid while more recent memories can get confused. The next time your friend tells a repeated story, start by smiling and showing genuine interest. Once they’re done, change the topic to something else. For example, if your friend asks if you’ve heard how their granddaughter won an award at school, you can reply enthusiastically with, Wow! That’s great news! You know, that reminds me of the fun times I had when I was in school many, many years ago! Do you remember any stories about when you went to school, such as who your favorite teacher was? The conversation then turns into an enjoyable reminiscing session and the two of you can giggle about the good old days.
When someone with dementia is being nasty in public, what do you do?
Dear Dementia Solutions:
What do you do when someone with the early stages of dementia becomes agitated by a stranger? For example, the other day a waiter asked my wife a typical question and she looked at him strangely and then snapped at him. We were all shocked. I was embarrassed. Was I right to tell her how rude she was (it really made her mad) or should I have let it go? Its just so hard to bite my tongue when I feel she should know better than to talk to people that way. ~Embarrassed Hubby
Dear Embarrassed Hubby:
Shock is a normal reaction when we see a family member or friend act inappropriately in public…especially when it is not her normal ways. To you it was clear that your wifes behaviour was out-of-line, however she was unable to make that same judgement. Dementias effect on the brain hampers the ability to judge. The truth is she didn’t know better when she snapped at the waiter, she used to know better. Her rude behaviour was not purposeful. As a caregiver, just remind yourself that you want to support her and that keeping the peace is the main goal. If you try to teach her the right way to behave, thinking it may deter her, or show her you are upset with her, the situation could quickly escalate beyond your control. A simple keeping the peace strategy for your next restaurant outing could be handing the waiter a small card as you go to your table that says, Please note: My family member has dementia. Thank you for your patience and understanding. This way, you avoid having to explain the reasons for any erratic behaviour to the waiter while your wife is listening. So yes, bite your tongue to keep the peace so you can enjoy your evening out.
Communication woes with husband in later stages of dementia.
Dear Dementia Solutions:
My husband is slipping into the late stages of Alzheimer’s and can’t communicate as he used to. He doesn’t seem to like it when I ask him questions. Should I continue encouraging him to talk to me? ~Conversation Sadness
Dear Conversation Sadness:
Its not easy seeing a life-long companion change;it changes your relationship and it changes how you view yourself. Once you were simply called wife, now you’re also known as a caregiver, adjusting may take lots of time. Understand that communication with your spouse can be both verbal and non-verbal. Non-verbal communication includes facial expressions, body movements, hand gestures, and showing pictures/props. When a loved one is in the later stages of dementia, its imperative that we learn a new way of communicating that includes less words and more visual prompts and cues. Asking too many questions can cause frustration in your husband if he doesn’t understand what you’re asking him or if he doesn’t know what answer to give. When talking to him, one short and simple sentence at a time is best. Also allow time for him to respond. For example, instead of asking a very general question, What do you want to eat for supper tonight? try Hey honey (with a smile) would you like spaghetti or pizza for supper? As the disease progresses, you can change your communication to make it more non-verbal and direct: Hey honey, (with a smile) I’m going to make pizza for supper, and then wait for their verbal response and/or their body language to talk to you. I encourage you to continue communicating, just try practicing it in a different way to support your husbands changing needs.
(You can learn more about The Importance of Good Communication in Chapter 10 of my book Cracking the Dementia Code.)
When administering medication becomes a challenge.
Dear Dementia Solutions:
Lately, my dad, who seems to be in the middle stages of Alzheimer’s, spits out his heart medication every time we give it to him. I’m afraid he’ll miss too many doses and it’ll cause him more health issues. What can I do? ~ Daughter with Medication Woes
Dear Daughter with Medication Woes:
Before you do anything, start by asking yourself some key questions: Why is my dad doing this? Is it because he feels he doesn’t need the medication? Is it because it tastes bad? Or perhaps, since its given whole, he may prefer it crushed and put into apple sauce or jam? To find the answers, pretend you’re a detective;observe your dads behaviour and try asking him, in a calm voice, why he spit the pill out. It could be that your dad doesn’t understand how important taking the pill is for his health. This is because those with dementia, especially in later stages, don’t have good judgement abilities. This is why disguising the pill in a food item may be an effective strategy. Understanding a dementia-related behaviour is about understanding the motivation behind the behaviour, it starts with asking why?
The importance of understanding the changes common with Alzheimers disease.
Dear Dementia Solutions:
My eldest daughter is having trouble coping with her father’s state of dementia, and I don’t know what to do. She often gets frustrated with him and doesn’t seem to want to visit us as she used to. Do you think shes angry and hasn’t accepted her fathers condition? What can I do to help? ~ Mom Wanting to Keep the Family Happy
Dear Mom Wanting to Keep the Family Happy:
Pulling away is likely an expression of your daughters fear. She needs more education when it comes to her fathers condition. Without an understanding of his type of dementia and whats happening inside his brain as a result, shes probably feeling unsure and scared. Gaining more knowledge about dementia will ease her anxiety and also help her learn tips on good communication. She can access great information through her local Alzheimers Society as well as through a basic online web search for facts and services relating to dementia. If you don’t want to directly urge her to seek out information, you could pick up some books and pamphlets yourself, and quietly leave them within sight of her. Keep in mind that well never be able to control others, we can try, but in reality we can only control ourselves. If your daughter chooses not to become more educated on dementia, all you can do is accept her wishes. Stay positive! It sounds like you’re doing a great job at caring for your husband.
Do you have a specific question relating to dementia that you need answered? Please submit your questions by email to: [email protected]
Karen Tyrell CDP, CPCA is a Dementia Consultant & Educator for Personalized Dementia Solutions based in British Columbia (www.dementiasolutions.ca) and the author of the book Cracking the Dementia Code – Creative Solutions to Cope with Changed Behaviours. She offers her expertise on dementia care through speaking engagements, workshops and by working one-on-one with families and caregivers.
