Dementia: A Guide to Awareness and Adaptation
Learning that a loved one has been diagnosed with dementia is a profoundly emotional and challenging experience. For many, their understanding of dementia is shaped by media portrayals or prior personal experiences. Unfortunately, these depictions often lack accuracy and fail to provide practical guidance for navigating this new reality. Sonia is all to familiar with this: she started her Activity Professional journey in a memory care facility. Luckily, her supervisor and the company she worked for spent the time necessary to give her the much needed education.
Recognizing the importance of education, the National Council of Certified Dementia Practitioners (NCCDP) dedicates February 14–21 as Dementia Awareness Week. This observance aims to educate, raise awareness, and empower families, caregivers, and communities to better understand dementia and provide compassionate care.
What is Dementia?
Dementia is not a single disease but a general term for a decline in cognitive abilities severe enough to interfere with daily life. It affects memory, thinking, and social skills, making it increasingly difficult for individuals to manage their routines.
How is it Different From Regular Aging?
It’s natural to occasionally forget where you placed your keys or struggle to recall a name. However, dementia is not a normal part of aging. Unlike age-related forgetfulness, dementia involves persistent cognitive impairment that disrupts independence and quality of life. For example: forgetting what day it is occasionally is normal. However, consistently forgetting what month or year it is could indicate something more serious.
Different Types of Dementia
Understanding the specific type of dementia your loved one has can provide insights into symptoms and care strategies. There are many different diseases that fall under the dementia umbrella, including, but not limited to:
Alzheimer’s Disease: The most common type, marked by memory loss, confusion, and difficulty with language or problem-solving.
Vascular Dementia: Often caused by strokes or reduced blood flow to the brain, leading to impaired judgment and decision-making.
Dementia with Lewy Bodies: Characterized by hallucinations, sleep disturbances, and motor impairments.
Frontotemporal Dementia: Typically affects personality, behavior, and language first, rather than memory.
Parkinson’s Disease Dementia: Characterized by movement difficulties, slowed thought processes, and visual hallucinations.
Huntington’s Disease: Results from a genetic disorder and typically involves behavioral changes, impaired judgment, and movement challenges.
Mixed Dementia: Involves a combination of multiple types, such as Alzheimer’s and vascular dementia, presenting a blend of symptoms.
Stages of Dementia
Dementia progresses in stages, each with unique challenges. Understanding these stages can help caregivers anticipate needs and adjust support accordingly. It is important to note that people often mask their symptoms
While the progression can vary from person to person, dementia is generally categorized into three main stages:
Early Stage (Mild Dementia)
In the early stage, symptoms are often subtle and may be mistaken for normal aging. Individuals may still function independently but start to experience:
Difficulty recalling recent events or conversations.
Challenges in planning or organizing tasks (e.g., paying bills or following recipes).
Increased forgetfulness, particularly with names or appointments.
Changes in mood, such as mild depression or irritability.
At this stage, it’s important to seek a diagnosis, as early intervention can help slow progression and provide time to plan for the future.
Middle Stage (Moderate Dementia)
The middle stage is typically the longest and can last several years. Symptoms become more pronounced, and individuals usually require greater support with daily activities. Common signs include:
Increased memory loss, especially for personal details like their address or phone number.
Confusion about time, place, or events.
Difficulty recognizing family members or familiar faces.
Repetitive questions or statements.
Wandering or becoming lost in familiar areas.
Behavioral changes, including agitation, paranoia, or withdrawal.
Caregivers often find this stage the most challenging, as loved ones may need assistance with dressing, bathing, and managing medications. Establishing routines and maintaining a calm, structured environment can help reduce confusion and anxiety.
Late Stage (Severe Dementia)
In the late stage, individuals experience significant cognitive and physical decline. They are likely to require full-time care, as they may:
Lose the ability to communicate coherently.
Become bedridden or struggle with mobility.
Show severe memory loss, unable to recognize close family or themselves.
Exhibit significant personality changes or a loss of interest in surroundings.
At this stage, the focus shifts to ensuring comfort and dignity. Hospice care or specialized support may become necessary. Families are encouraged to prioritize meaningful interactions, even if verbal communication is limited. Simple acts, like holding hands or playing familiar music, can still provide emotional connection.
Sundowning
You may have heard this term in passing but not know its meaning. Sundowning refers to increased confusion, agitation, or restlessness that occurs in the late afternoon or early evening, often as daylight fades. It typically begins in the middle stage of dementia but can occur in the early stage too.
The exact cause of sundowning is not fully understood, but it is believed to result from a combination of factors, including:
Previously established routines: Muscle memory, emotional ties to past roles, and lingering responsibilities that were once part of their daily life may resurface during the same time of day they were accustomed to performing those tasks. For example, an office worker might express a desire to "go home" as the workday ends.
Disruption to circadian rhythms: Changes in the brain may interfere with the body's internal clock.
Fatigue: Individuals may feel overwhelmed or tired after a full day of activity.
Environmental triggers: Low lighting or increased shadows can create confusion or anxiety.
Unmet needs: Hunger, thirst, or physical discomfort can exacerbate symptoms.
Do’s and Don’ts When Interacting with Someone with Dementia
Those suffering with dementia often have their individuality, autonomy and choice taken from them. Though this is usually not coming from a place of malice, it can leave them with feelings of frustration and restlessness. It is important to remember that these individuals are still adults, and should be treated as such.
Do give them choice but don’t overwhelm them. Keep the options simple. Try two or three choices at a time, more may be confusing.
Do simplify communication. Use clear, short sentences and repeat information if needed.
Do work in their reality and don’t correct or argue. Engage with their version of the world and focus on their feelings over factual accuracy. This will reduce stress and promote comfort.
Do validate their experience and don’t dismiss their emotions. Acknowledge their feelings, even if their words seem confused or unrelated. Despite a reaction seeming disproportionate to you, it is real to them.
Do maintain a routine but don’t make decisions for them. Consistency helps reduce anxiety and confusion and offering limited, manageable options fosters a sense of independence.
Do provide alternative tasks that align with their past routines, such as folding napkins for "dinner prep" or organizing items to "get ready for tomorrow."
Don’t overwhelm their senses. Avoid loud noises, harsh lighting, or strong smells that might cause discomfort or agitation. Opt for a calm, soothing environment to help them feel at ease.
Most importantly do be patient and don’t take it personally. Give them time to respond and avoid rushing or interrupting. Remember, Dementia-driven behaviors are not intentional.
Adapting Activities for Those with Dementia
We believe that activities are essential for promoting emotional and cognitive wellness. This is even more important for those experiencing memory loss. Here are a few tips for tailoring activities:
Emphasize Familiarity: Choose activities they once enjoyed, such as gardening, music, or simple crafts.
Simplify Instructions: Break tasks into manageable steps and provide visual or verbal cues.
Engage the Senses: Incorporate sensory elements, like aromatherapy, textured objects, or favorite songs, to spark joy and memories.
Promote Success: Focus on the process, not the outcome. Even small achievements can bring pride and satisfaction.
Create a Safe Environment: Ensure activities are free from hazards and adapt them to their physical and cognitive abilities.
Example Case Study
Name: Amanda
Behaviors:
Walks out of her room at breakfast time in her pajamas and no shoes.
Often asks others to repeat what they said, forgetting shortly after.
Shows restlessness in the late afternoon, pacing the hallways and expressing a desire to "go home."
Sometimes becomes frustrated or agitated when others don’t understand her requests.
Occasionally asks for family members that have passed away.
Claims she “can’t” today as she is too tired.
History: Amanda was a florist for over 30 years and took great pride in arranging flowers for weddings, holidays, and community events. She is also a mother of three and loved hosting family dinners, where she enjoyed setting the table and arranging beautiful centerpieces. Her husband passed away a few years ago.
Suggested Activities:
Flower arranging: Provide her with a variety of artificial or fresh flowers and vases to create simple arrangements.
Napkin folding: Offer her a stack of cloth napkins and allow her to fold and organize them for "dinner prep."
Nature walks: Guide her on short walks in a garden or park, encouraging her to identify flowers or trees.
Sensory box: Create a box with textured fabrics, dried flowers, and floral-scented items to engage her senses.
Music sessions: Play calming classical music or songs she might have enjoyed during her years as a florist.
Accommodations:
Adjust timings so that Amanda is helped with getting ready for the day before she leaves her room.
Use our R.A.T.E System to ensure activities are set up in a quiet, well-lit area to reduce distractions and agitation.
Provide simple, step-by-step instructions with visual examples, especially for flower arranging.
Offer comfortable shoes and a light sweater to ensure Amanda feels physically at ease during nature walks.
Validate her feelings when she expresses a desire to "go home" by redirecting her to a meaningful activity, like setting up a "dinner table" with napkins and flowers.
Keep interactions calm and patient, allowing her to move at her own pace without pressure.
Speak clearly and not to quickly.
Do not remind her that her family members have passed away. Instead, make an excuse for why they might not be there, such as they went to the store and will be right back, or they’re working late. Then redirect her.
By thoughtfully adapting activities, we can empower individuals with dementia to remain active, engaged, and connected to the world around them.
Dementia is a journey, not just for the individual diagnosed but also for their loved ones and caregivers. With awareness, compassion, and informed strategies, we can create an environment of understanding and dignity. Let’s use this week as an opportunity to learn, share, and advocate for those affected by dementia. And if you only take one thing from this post let it be this: Those with dementia might not remember who you are, but they will remember how you made them feel.
Further Reading:
