Dementia Solutions – Caregiving Advice, October 2015

Dementia expert, Karen Tyrell, offers answers to www.carp.ca visitors for their situation-specific questions. Karen is a dementia consultant who can point you in the right direction, giving quick insight and personalized answers to help you with dementia care challenges.

 

Do you have a specific question relating to dementia that you need answered? Please submit your questions by email to: [email protected]

October, 2015 Update

1.  Thinking Ahead- How Can I Best Prepare for the Possibility of Living with Dementia?

 Dear Dementia Solutions

“I’m a 71 year old retired teacher and I’m concerned about the history of dementia in my family, since the only surviving members of my family are two female cousins who both live with the condition. I’m worried about developing it as well and don’t want to be unprepared. This is why I eat well, exercise regularly, and have also made efforts to organize my will and issues relating to powers of attorney. What else should I be doing to best organize my affairs for the future?”

 ~Worried About the Future

Dear worried about the future:

Firstly, know that you are not alone in your concerns. There are many, like you, who have a history of dementia in their family and have to similarly think about planning ahead. I commend you for being proactive in your efforts.

You are already off to a great start! Ensuring that you have a Power of Attorney and Power of Personal Care/ Representation Agreement is one of the first steps I recommend to those diagnosed with an early stage of dementia. Another important item to consider is an Advance Care Directive—a document in which you outline what your care preferences are in the event that you are unable to communicate them in the future. At www.advancecareplanning.ca you can find information about how to create your own advance care directive, in accordance with your province’s regulations.

When making your wishes known, do not be afraid to share all of your concerns, including those unrelated to medical procedures. For example, you may write that you do not want to have your hair cut short or perhaps there’s a special necklace that you would always like to be wearing. Remember that though you may never need an advance care directive, it is empowering to know that, should you be unable to communicate, your thoughts and wishes will still be heard.

Being as comprehensive as possible in describing your wishes will also help the person appointed as your substitute decision maker. This is especially true if you do not have a family member to take on this role, and require a public guardian or trustee to be appointed instead. As someone who may not know you as well, they will have a clearer understanding of what actions to take on your behalf and will be able to proceed with more confidence.

It sounds like you are already on the right track in terms of staying healthy through exercise and proper nutrition. Remember to also get adequate sleep, reduce stress and keep your brain active. A healthy lifestyle coupled with taking steps to prepare and knowing that you have supportive resources available, should you need them, will allow you to move forward with greater optimism and peace of mind.

2.  To Tell or Not To Tell- Should I Tell My Husband That He Has Dementia?

Dear Dementia Solutions:

“Two years ago, my husband started to be mean and aggressive with people he was not getting along with. This was very unlike his usual personality, so I took him to see the doctor who diagnosed him with the early stages of vascular dementia. Most of the people who know him can’t believe he has dementia because he seems so normal, can converse fairly well, and actually looks like he’s 65 even though he’s 78. Living with him, I get a different perspective, and can see the effects of dementia on his reasoning abilities. My husband isn’t aware of his diagnosis but has asked to know about it. Should I tell him?”

 ~To Tell or Not to Tell

 Dear To Tell or not to tell:

In terms of telling your husband about his condition, I usually recommend that it is best to let a person know about their dementia when they are in the early stages, especially when they are wanting to know. It is never easy for family members to know when the ‘right’ time is or what the ‘right’ words to use are—but if a loved one wants to know, then it is important that the truth is shared with them as soon as possible.

In some cases a person affected by dementia may not think that there is anything wrong with them and may not be receptive to hearing that they have dementia, even if you tried explaining to them what a doctor clearly stated. This is known as Anosognosia—a condition where a person strongly believes that they do not have dementia even when a professional has diagnosed them. In this case, trying to force the person affected to understand that they have dementia can result in undue distress, so it may be best to leave the word ‘dementia’ out of daily discussions and keep the peace. If telling your husband about his dementia sparks upset or hostility, this is your cue to divert the conversation to a different topic.

Witnessing the effects of dementia on a loved one can be difficult. Personality changes can be particularly challenging, because at times it may feel as if you know longer know the person you once knew so well. It is important to keep reminding yourself that your husband’s changes are reflections of his condition, and that there are effective strategies for managing his behaviours. Remember that you know your husband better than anyone else, and even if others are not noticing his personality changes, it is important that you keep moving ahead with any necessary preparations.

Vascular dementia is a progressive condition, a journey during which various changes surface. Navigating these changes can be rocky at times but remember that there are helping hands and supportive resources that you can use at any time along the way, whenever needed. Know that you are not alone and know that you are supported!

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 Inc. (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.

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