senior with dementia along with her caregiver

Dementia is a journey that is as unique as the individuals who embark on it. It's a path paved with challenges, breakthroughs, and moments of profound connection.

As we delve into the intricacies of dementia care, it's crucial to shift our perspective from what is lost to what remains.

This blog post draws from the insights shared in a recent workshop aimed at demystifying dementia and highlighting the retained abilities at every stage of the condition.

Understanding Dementia Through Functional Assessment

The Functional Assessment Staging Tool (FAST) offers a retro genesis model, a map that retraces the progression of dementia from the end back to the beginning.

However, for caregivers and professionals working with individuals with dementia, the Allen Cognitive Disabilities Model proves to be an indispensable tool. It emphasizes retained abilities rather than just the impairments, empowering us to support our loved ones effectively.

Retained Abilities: Focusing on What's Possible

In the world of dementia, we often fixate on the inabilities that come with the condition. Yet, individuals with dementia retain certain abilities at every stage.

These retained abilities can range from simple recognition of everyday items to the capacity to perform familiar tasks. Acknowledging and leveraging these abilities can improve the quality of life for those with dementia.

senior with dementia along with her caregiver (2)

From Independence to Assistance: The Journey Through Dementia Stages

The progression of dementia can be broken down into several stages, where individuals move from complete independence to requiring various levels of assistance:

Early Stages: Mild Cognitive Impairment

At this juncture, individuals may still engage in familiar activities, manage basic self-care, and even maintain hobbies. They might, however, begin to struggle with planning, complex tasks, and following rules.

Middle Stages: The Onset of Dependence

As dementia advances, individuals find it challenging to pick appropriate clothing, follow complex leisure activities, and may need help with basic activities of daily living (ADLs). Support and consistent guidance become increasingly important.

Late Stages: Increased Need for Assistance

The late stages of dementia are characterized by significant reliance on caregivers for dressing, bathing, and mobility. Individuals may still participate in activities with the right cues and support but require constant supervision.

End Stages: Sensory Engagement and Comfort Care

In the final stages, the focus shifts to sensory stimulation—engaging the senses of smell, sight, touch, and sound—to provide comfort and connection. This approach honors the person's experience and fosters moments of joy, even in the absence of more complex interactions.

senior with dementia along with her caregiver (3)

Strategies for Enhancing Communication and Care

Communication becomes a challenge as dementia progresses. Caregivers can adopt strategies to minimize distractions, anticipate communication needs, and use repetition to facilitate understanding. It's also essential to read nonverbal cues and prevent frustration during interactions.

Addressing Mobility and Activities

Throughout the dementia journey, mobility can vary greatly. From walking independently to requiring hand-held assistance, adapting the environment and activities to suit the individual's current abilities is key.

Emotional Impact: Dealing with Stigma and Acceptance

The stigma associated with cognitive loss is a significant barrier to embracing life with dementia. Early recognition and acceptance can help in strategizing for a fulfilling journey, despite the challenges. Every person's dementia experience is distinct, and embracing this diversity is crucial for compassionate care.

Concluding Thoughts: The Importance of Community and Support

As caregivers and loved ones, it's our responsibility to focus on the positives and provide the best care possible. This includes recognizing the need for community support, whether it's at home or in a facility. At every stage, the goal remains the same: to honor the individual's dignity and preferences while ensuring their safety and well-being.

In closing, we are reminded that dementia, though complex, does not define a person. By concentrating on retained abilities and creating a supportive environment, we can navigate this journey with grace and empathy. As we say our goodbyes, let's carry with us the message of hope and the commitment to be there for each other, every step of the way.

Let me know in the comments below if you have questions about dementia that you need answered.

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About the author

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”.

Disclaimer: These blogs, videos and any work done by Lizette Cloete OT, as a Member of Think Different Dementia, LLC, is given only as educational content and consulting work. This does not create an Occupational Therapist-Patient Relationship. The educational content and consulting work performed should not be considered medical treatment as an Occupational Therapist. The consulting work does not take the place of medical work normally performed by a licensed Occupational Therapist. Please consult a licensed Occupational Therapist for medical advice.

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