Why Getting a Dementia Diagnosis is Important: Caregiver Chats (Video)
Submitted by Dr. Lakelyn Hogan
Gerontologist and Caregiver Advocate
Home Instead
Caregivers and care partners encounter a variety of issues and challenges along their caregiving journey. It can be helpful to learn from the experts to gain insights and helpful information.
Home Instead’s Caregiver Chats
This past year, Home Instead sponsored 11 informative Caregiver Chats on a variety of topics. The host of Caregiver Chats, gerontologist Dr. Lakelyn Eichenberger, interviewed professionals, authors, family caregivers and advocates on important topics related to caregiving.
One of the chats focused on the topic of “Why Getting a Dementia Diagnosis is Important” with guest Lori La Bey. This article highlights key takeaways from the chat. You can watch or listen to the full hour-long discussion below.
Lori La Bey is the founder of Alzheimer’s Speaks and co-founder of Dementia Map. She is a change agent from Minnesota known around the world when it comes to dementia care. Lori joined Dr. Lakelyn in an informative discussion about getting a diagnosis and how sometimes it can be challenging.
Three main themes surfaced during the chat including:
The diagnosis journey can be long, but stick with it.
At the beginning of the chat, Lori shared that her mom lived with dementia for 30 years and it took 10 years to get a dementia diagnosis. The good news is, since then the diagnosis process has improved, but still takes about 2-3 years on average.
The reason it could take so long is that a lot of other things need to be ruled out. It could be something treatable that is not related to dementia. Lori shared that sometimes individuals are met with responses such as “you’re depressed” or “this is a midlife crisis” but if you’re concerned and noticing changes in your cognition, seek out a second opinion.
It is critical to advocate for yourself or a loved one, so push if you know something is wrong.
Something else to consider is that sometimes families don’t want the diagnosis and therefore may be hesitant to seek out or push for a diagnosis. They may also be in denial.
However, Lori shared that often individuals living with dementia are relieved and feel validated after receiving the diagnosis. They could tell something was wrong and now they are relieved to know the cause and can move forward.
Life isn’t over after a diagnosis.
An important part of Lori and Dr. Lakelyn’s chat involved how people are living a lot longer with dementia and living well with dementia.
Lori shared that once you have a diagnosis, it is important to develop a plan. Take inventory of what is important and prioritize what matters most.
Lori encouraged each individual with dementia to focus on life not from a “death angle,” but from the “living angle.” She recommended that individuals living with dementia find a mentor who is also living with dementia. Seeing other people who are living well with dementia can help reduce the fear and stigma.
Normalize the conversation.
Unfortunately, there is still a stigma surrounding dementia. Lori and Dr. Lakelyn talked about the need for dementia education and for people to see examples of people living well with the disease.
They also discussed the importance of normalizing conversations about cognitive changes to help address stigma and denial. Lori suggested bringing up the conversation about cognitive concerns from the angle of “change.” We are all changing and go through various changes throughout our lives. So by focusing the conversation around the change that both parties are experiencing, it may help the individual open up more.
Once the conversation about change is initiated, then you can ask the individual if they have noticed any changes specifically in their cognition.
Beautiful Detours
Towards the end of the discussion Lori provided a beautiful quote about dementia:
“There is a lot of beauty in the detours of life, if we just take a breath and go there.”
Caregiver Chat
Enjoy the Caregiver Chat, in its entirety, below.
