Dementia can be such a confusing disease because it progresses gradually, with subtle changes that may not be immediately apparent. I've had patients newly diagnosed with dementia, and without spending time with them, it's hard to notice any signs. Conversely, in later stages, the symptoms are unmistakable, making communication a significant challenge.
The best approach with someone in the early stages is to ask them to share what they can and cannot understand and to let you know when they are confused or need time to think before responding. Many people mistakenly assume that when an older adult doesn’t answer right away, they didn't hear the question. In reality, they may be processing the information and recalling what they need before answering. This assumption can lead to unnecessary interventions like hearing aids or misdiagnoses when it could be early-stage dementia.
I recently read an article titled "The Do's and Don'ts of Dementia," which I found somewhat misleading as it didn’t address the different stages of dementia. Effective communication requires understanding the individual's level and considering any emotional strain. While the overall tips were helpful, they might be inappropriate for those in the early stages but suitable for those in the later stages.
So, let's explore the stages of dementia before diving into the do's and don'ts. According to the Alzheimer’s Association, there are three stages:
Early Stage (Mild)
In the early stage, individuals may experience mild cognitive decline, often unnoticed by friends and family. They may have memory lapses, but daily functioning remains generally intact. Common difficulties include:
- Memory loss.
- Difficulty planning and organizing.
- Finding the right word or name.
- Confusion with time, place, dates, or events.
- Difficulty performing tasks in social or work settings.
- Mood or personality changes.
Note: Many of these issues can also occur when we are tired or overstressed, so they are not exclusive to dementia.
Middle Stage (Moderate)
The middle stage is marked by more noticeable cognitive decline. Memory loss becomes more apparent, and individuals may struggle with tasks such as managing finances, remembering names and faces, and organizing thoughts. Behavioral changes like confusion and frustration may also emerge. In this stage, you might see:
- Increased memory loss.
- Forgetfulness of events or personal history.
- Moodiness or withdrawal.
- Difficulty recalling personal information like addresses or phone numbers.
- Confusion about location or time.
- Problems recognizing objects and their use.
- Difficulty making decisions.
- Trouble with clothing choices and personal hygiene.
- Incontinence.
- Sleepless nights.
- Personality and behavioral changes, including suspiciousness, delusions, or repetitive behaviors.
This stage can last for years, and it’s crucial to have regular check-ins to monitor subtle changes. Someone visiting every three months can often notice declines that daily caregivers might miss.
Late Stage (Severe)
In the late stage, individuals experience significant cognitive decline and a profound impact on daily functioning. Characteristics of this stage include:
- Profound memory loss.
- Loss of language, though they may still recognize their name or familiar music.
- Loss of motor skills, requiring full-time assistance with daily activities.
- Loss of awareness of recent experiences and surroundings.
- Inability to recognize familiar people.
- Difficulty swallowing.
- Changes in sleep patterns.
- Increased vulnerability to infections, especially pneumonia.
Care in the late stages must be compassionate and comforting. Enlisting the help of a palliative care expert can guide caregivers through their own self-care and ensure the safety and comfort of the person with dementia.
If you or someone you care for has been diagnosed with dementia, it’s crucial to prepare for these changes in advance. As seniors, we should start conversations early to avoid confusion later. My new FREE guide, The Super Ager's Starter Guide, addresses this very thing. Check out the questions on pages 12-13 to clear up any confusing conversations now, setting a foundation for better communication as the disease progresses.
