Dementia Solutions – Caregiving Advice, November 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]

November, 2015 Update

1.  Repetition Exasperation- As a Caregiver, How Can I Curb My Own Feelings of Frustration?

 Dear Dementia Solutions

“I’m a caregiver for an individual with dementia and I need some advice about how to cope with the feelings of frustration that I experience. I get especially triggered whenever I hear the same questions repeated over and over again. I don’t want my aggravation to boil over into an outward show of anger but I’m having trouble ignoring the frequent repetition. Are there techniques I can use to help curb my frustration?”

~  Frustrated Caregiver

Dear Frustrated Caregiver:

You are not alone. Many caregivers experience exasperation and irritation when faced with challenging dementia-related behaviours, such as wandering, aggression, or repeated questioning. The good news is that there are ways for both you, the caregiver, and the person you are caring for to find greater peace of mind.

Every behaviour is motivated by a reason that extends beyond dementia itself. Whenever you hear the same question being repeated by the person you are caring for, start by asking yourself the key question—WHY? Are they worried or concerned about something? By finding out what is bothering them, you can be more effective in addressing their concerns through your answer.

When answering the question, remember to use a calm and gentle voice, and avoid statements such as “I told you already!” or “Not again!” Write the answer down as well (using large print if they have poor eyesight). While you relay the details, try triggering a memory to show you truly care. For example, if the individual used to mark a calendar to keep track of tasks, you could say, “I can tell you’re really worried about missing your appointment…I’ll do everything I can to make sure you don’t miss it. I’ll even mark it in my calendar and yours so we have double notes.” Body language such as pointing, or a reassuring touch or smile, can also add extra emphasis.

Once you have offered your answer, change the topic of conversation or engage in an activity that is of interest to the person with dementia. Some activities that can be effective tools of distraction are card games, sorting items such as buttons and silverware, listening to familiar music, flipping through a picture book, or simply reminiscing. A change of scenery may also be what’s needed, so try taking a drive around the neighbourhood or going outside for a walk. If unable to go outside, even moving to a different room can make a difference.

All these steps are important, but the crucial ingredient for curbing your frustration is self-care. Like a pot of water on an overheated stove, caregivers often try keeping a lid on simmering feelings of frustration, but the tighter the lid, the more they spill over. To ease your frustration you need to embrace techniques for relaxation such as deep breathing and taking breaks (even if just for a few minutes in a quiet place). Longer “time-off” periods and sharing your feelings with others (whether through support groups; speaking to a doctor, counsellor, the Alzheimer’s Society or a dementia consultant; or chats with family and friends) also helps in recharging batteries. Finally, constantly remind yourself that the repetitive questioning is not done on purpose but rather is an effect of dementia.  It sounds like you are already doing this but reminding yourself regularly can help.

Above all else, remember that caring for yourself will help you in caring for others. Through a few simple changes, you can usher in more ease and comfort for yourself and the person you are caring for.

 2.  Asking the Doctor- Should I Ask My Mother’s Doctor About Whether She May Have Dementia?

 Dear Dementia Solutions:

“I’m concerned that my mother is exhibiting symptoms of dementia. Would it be inappropriate to take the initiative in asking her doctor to test her for it?”

 Hesitant Harriet

 Dear Hesitant Harriet:

We can all be a bit unsure of taking the initiative at times, fearing that it may infringe on someone’s personal boundaries. However, being proactive can also be especially important in ensuring that appropriate action is taken when needed. For this reason, I encourage you to inform your mother’s GP (family physician) about your worries regarding possible symptoms of dementia.

Since many family physicians only spend 20 minutes or less with each patient, cognitive impairments can often go undetected during simple checkups. As a result, at the end of a checkup that hasn’t raised any cognitive red flags, a physician may not feel the need to administer a cognitive test or to refer the patient to a specialist. Additionally, some patients may not disclose to the doctor the full extent of the changes they are experiencing, instead making statements such as “I feel fine!” or “I’m feeling great!” which can mask serious health problems. I’ve often heard family members say to me, “If they only spent the entire day with my loved one, the doctor would realize they are NOT okay.”

In my experience, many family doctors are open to hearing the concerns of a family member because this helps with diagnosis. Even if they aren’t open to your input, remember that there is no harm in trying. Voice your concerns and even write down notes about the types of behavioural changes you’ve noticed your mother displaying. Her doctor may find your perspective to be very helpful and may even add it to her chart for the next checkup.

Finally, try to maintain a positive energy and stay optimistic when you do accompany your mother to the doctor. This will help her feel better about having you there. Remember that even if a dementia is detected, it doesn’t necessarily mean that it is due to degenerative Alzheimer’s disease, it could instead be caused by a treatable condition such as a vitamin deficiency.

Sometimes being proactive means stepping out of your comfort zone. Though you may be hesitant, empower yourself with the knowledge that you are advocating for the care, comfort and safety of a loved one. Good luck!

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.