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When a person in your life is first diagnosed with dementia, it can be an overwhelming, frightening and isolating experience. Chances are, you had started to notice some minor changes over the years, like forgetting passwords or losing keys, but attributed these situations to normal aging and forgetfulness. However, with dementia, those minor inconveniences will now impair daily functioning, it can be very difficult for people who haven’t witnessed those changes over time to understand or recognize the challenges that you’ve been facing. And for the caregiver, when family and friends don’t understand the impact on you, the caregiver, it can bring up frustrations, anxieties and complex emotions.
The symptoms of dementia can vary from person to person
In addition, it can be very confusing when people with dementia are still able to accomplish difficult tasks or discuss complex concepts, yet are not able to recall a conversation that occurred very recently or remember the date of an upcoming appointment. Dementia negatively impacts the brain, and depending on which part of the brain is affected, the symptoms for every individual can be very different or there can be many inconsistent behaviours from the same person. For example:
- A person with dementia may get lost while driving to the grocery store, but are able to have a detailed conversation about specific events that happened during a family vacation many years ago;
- Or they may be able to calculate complex math problems, yet will struggle to remember the word of a familiar object, like a piece of furniture or clothing.
The Impact on the family caregiver
Many people caring for someone with dementia experience feelings of guilt and remorse because they might become angry or frustrated when they see these odd or confusing behaviours. And it can feel extremely isolating when family or friends are only observing the “higher functioning” behaviours and will dismiss or minimize the dementia symptoms. And although those behaviours may not be catastrophic, they are still an ongoing, perpetual challenges when caring for someone with dementia.
Additionally, in many cases, the person with dementia is not able to recognize, understand or even remember that they have this diagnosis. And unless people are interacting with them on a very regular basis, it is not uncommon for the person with dementia to become very adept at hiding or concealing the problems they are facing, at least for brief periods of time.
There are, however, various strategies that may help when family and friends are not fully understanding what the diagnosis of dementia means, especially when they are not seeing any glaring or obvious symptoms.
- Provide specific examples of the changes you’ve observed: If you’re able to have a private and confidential conversation with friends and family, it may be helpful to provide very specific examples of the changes you’ve observed, with an explanation of how it relates to dementia. There are many resources available online, through your local Alzheimer’s Society or from your family doctor, that can give you accurate and relevant information to educate family and friends regarding the complexities and challenges of caring for someone with dementia.
- Provide specifics ways they can help you: For those people who may not want the detailed information regarding dementia, it might be helpful to ask friends and family to assist in specific caregiving responsibilities. Many people will want to help, in any way they can, but they are uncertain of what would be helpful or they want to avoid being too intrusive or presumptuous. Therefore, asking someone to pick up some groceries, or to take your husband out for a coffee while you get some housework done, can be a very valuable experience for everyone.
- Self-care: And finally, the concept of self-care cannot be overemphasized. Self-care does not need to be elaborate or overinvolved. It can be closing your eyes for 30 seconds and breathing in some fresh air, while acknowledging to yourself that you are in a complicated and challenging situation. It can be reading a book, watching TV, talking to a friend or anything else that brings a moment of enjoyment. Most importantly, you will need to learn how to forgive yourself and recognize that you are also experiencing the effects of this diagnosis, so it’s important to remember that accepting help is truly a sign of strength.
The Enhancing Care Program Can Help
You are not alone, contact us with your concerns and support needs
For more information and assistance on caregiving challenges in managing dementia at home:
The Enhancing Care for Ontario Dementia Care Partners, Clinical Team
Cyril, Dorothy, Joel and Jill Reitman Centre
for Alzheimer’s Support and Training & Outpatient Geriatric Psychiatry