Having “The Dementia” Conversation
4 min read
What is Dementia?
Dementia describes disabling problems in multiple cognitive abilities. The essential word here is “disabling.” The person needs assistance because of measurable declines in abilities such as memory, attention, and language. Dementia is usually caused by diseases, the most common one, but not the only one, being Alzheimer’s. (AARP)
The National Institute on Aging defines dementia in two parts:
- Having two or more core functions that are impaired. These functions include memory, language skills, visual perception, and the ability to focus and pay attention. Also included are cognitive skills such as the ability to reason and solve problems.
- A loss of brain function severe enough that a person cannot do normal everyday tasks.
Challenges with having the conversation
Normal Age-related Changes or Dementia?
After about age 50, everyone has trouble occasionally finding words and experiences lapses in memory. The decision we all struggle with is whether those lapses indicate the need for a doctor’s assessment of our cognitive abilities. The struggle for many friends and family members is understanding where mild cognitive aging issues end and dementia begins. Hence, the resistance, hesitation, and/or procrastination of initiating the tough conversation with your loved one to schedule a medical assessment.
Family members and friends want to help their loved one and have a conversation about their concerns and observations but are cautiously aware of the severe sensitivity involved.
Common Concerns
Everyday Health conducted a survey of 1000 individuals and published their results in an article in 2018. They found that 75% of Americans would be concerned about offending a family member or friend if they were to approach that person about observed signs of cognitive decline. 80% of survey respondents thought a conversation would cause unnecessary worry, and 69% expressed concern that it would ruin their relationship. 80% would prefer to avoid conflict and shift the responsibility to someone else in the family. Most alarmingly, 1/3rd said they would not say anything at all and over 1/3rd would wait until the symptoms had progressed before addressing the person. (Everyday Health)
Benefits of having the conversation
Loss of memory is the number one fear in older adults. Naturally, we are scared and reluctant to admit it when we realize our memory is being impaired. This is a critical time for friends and family members to have the courage and initiate the conversation to get help now. This will enable the person with dementia to get the best care and potentially slow down the progression to more severe symptoms. If in the early stages of dementia, your loved one has a chance to express their wishes and have a voice in their future care. Also, some medications work better the earlier people start them. It’s necessary to have the conversation as early as possible.
1. Assess Your Loved One's Situation
- Do you recognize unusual signs and symptoms?
- What changes in memory, thinking, or behavior do you see? Are these changes affecting the person’s everyday life?
- What else is going on? Could it be something else mimicking dementia? (i.e. new medication or lifestyle factors?)
- Has anyone else noticed uncharacteristic changes? If so, what are they?
2. How to Have the Conversation
- Decide who should initiate the one-on-one conversation. Avoid group discussion as it may be overwhelming.
- Select the best time of day when they are the calmest and most reasonable. Fatigue can aggravate memory loss or behavioral changes.
- Select the most comfortable location. (i.e. home, taking a walk, park)
- Prepare ahead of time what you or the person having the conversation will say.
- “I’ve noticed you’ve had difficulty remembering things lately and I’m concerned.”
- “Have you noticed it? Are you worried about it?”
- “How have you been feeling lately? Do you have any concerns?”
- “I noticed you have trouble finding the word you want to say, and it worries me. Have you noticed this as well?”
- Offer to make an appointment with their physician and to go together. Provide words of encouragement that will help the person to be agreeable. Use words like “we” and “us” so they do not feel they are on this journey alone.
- “There are lots of things that could be causing this, and dementia may or may not be one of them. Let’s see if the doctor can help us figure this out.”
- “It’s important to note there are different stages of dementia.”
- “The sooner we know what’s causing these problems, the sooner we can work on it.”
- “I think it would give us both peace of mind if we talked with a doctor.”
- If needed, have multiple conversations no matter how much pushback you receive.
- Family members of individuals with symptoms may also be defensive, fearful, or in denial.
- Get other relatives and healthcare providers involved. It’s ok to call the doctor’s office first and let them know about your concerns.
- Reach out for help and support from experts in this field.
3. Establish a Support System
If deemed necessary, establish a support system, and have resources to help with daily chores.
- Does someone need to help with finances?
- Who can help with transportation needs?
- How should general health care needs be addressed?
- Is help needed with grocery shopping?
- What other day-to-day help is needed?
Having the conversation with your loved one is not an easy task for anyone, yet it is very important to start the conversation as early as possible. This is the critical first step in your journey to provide the appropriate care for your loved one. Every situation is unique and has its own challenges. Please know that we are here to support you in your time of need regardless of where you are in your journey.
You may find additional articles in our Amazing Place blog such as, “6 Tips for Talking to Someone with Dementia.”
For more information, please contact our Connections Team by emailing Pam Berkley at pberkley@amazingplacehouston.org.
Additional Data Sources:
AARP, National Institute on Aging, Alzheimer’s Association, and Everyday Health