I often hear caregiver frustrations that their loved one surprises them with new and strange behaviors. “Mom just wandered off and out the door in the grocery store—she never does that,” “Dad threw his breakfast at the caregiver—why? He never did that before. What is going on?” What works today may not be effective tomorrow, adding to the difficulty caregivers face. How can you plan, budget, and know what to do for your loved one?
Dementia is a complex disease, with multiple types and a progression that can span up to 20 years, affecting each person differently. The phases of dementia—early, mid, and late—present unique challenges, making caregiving a daunting task. In addition, there are many different types of dementia, each with subtle variations of symptoms. Also, different dementias progress at different rates. For example, Alzheimer’s progresses slower in comparison to Lewy Body dementia. Individuals will also progress at different rates depending on their age and physical health.
Dementia is a progressive condition that can have a significant impact on a person's cognitive and physical abilities. While dementia affects individuals differently, there are common phases that many people experience as the condition progresses. Understanding these phases can help caregivers and loved ones provide appropriate support and care.
Early Stage of Dementia
The early stage of dementia is often characterized by subtle changes in memory, concentration, and mood. Individuals may have difficulty recalling recent events or remembering names, and may become easily confused or disoriented. In this phase, the person may still be able to manage daily tasks independently with some reminders and support. Consider these interventions for this phase:
Build your support network.
Join a support group.
Create strong daily routines.
Build a supportive environment.
Make and keep “to-do” lists.
Keep your loved one active and involved.
Use memory aids.
Stay social.
Middle Stage of Dementia
As dementia progresses to the middle stage, the symptoms become more pronounced. Memory loss becomes more severe, and individuals may struggle to recognize familiar faces or places. They may also experience difficulty with communication, such as finding the right words or organizing thoughts. In this stage, individuals may require more assistance with daily activities like dressing, bathing, and meal preparation. Consider these interventions for mid-phase dementia:
Do a safety check to reduce risk.
Respond to the emotion, not the question.
Develop and practice communication strategies.
Go with the flow.
Provide written reminders to help with short-term memory loss.
Embrace positive distraction.
Create meaningful and structured activities.
Get outdoors.
Balance personal needs with caregiving demands.
Late Stage of Dementia
In the late stage of dementia, individuals experience severe cognitive decline and may have difficulty recognizing family members, understanding their surroundings, or communicating effectively. Physical abilities also decline, leading to challenges with mobility, swallowing, and maintaining bladder and bowel control. Individuals in this stage often require around-the-clock care and support with all aspects of daily living. Consider these late-stage interventions:
Engage with music—music, music, and more music.
Employ sensory activities—hold hands, brush hair, gentle touches.
Get them outside.
Consider pet therapy.
Read, tell stories, read rhymes, and poems.
Stay positive.
End of Life Stage of Dementia
As dementia reaches its final stage, individuals may become completely dependent on others for care. They may lose the ability to eat, speak, or move independently. The end-of-life stage is a challenging time for both the individual and their loved ones, as they navigate complex emotions and decisions about palliative care and end-of-life preferences. Don’t forget about hospice, comfort, and dignity. Communication is critical even when they only have blank stares. They are still there, and finally remember that their sense of hearing is the last to go. Talk often and gently.
Taming the Chaos Phase by Phase - Conclusion
Throughout each phase of dementia, it is essential for caregivers and loved ones to provide compassionate and personalized care that respects the individual's dignity and autonomy. Maintaining a supportive environment, engaging in meaningful activities, and fostering a sense of connection and belonging can help individuals with dementia feel more comfortable and secure as they navigate the challenges of the condition.
Understanding the phases of dementia can help caregivers and loved ones anticipate and respond to the changing needs of individuals with the condition. By providing appropriate support and care at each stage, we can help individuals with dementia live as comfortably and meaningfully as possible. Caregiving is challenging, but with planning for all the phases of your loved one’s journey, you can build connection, provide nurturing, and promote well-being. Create your support network early, investigate your available resources, and find joy and meaning in the journey.
Call to Action
If you are a caregiver or have a loved one with dementia, don't face this journey alone. Reach out to local support groups, healthcare professionals, and dementia care organizations for guidance and assistance. Visit our website for more resources, tips, and support to help you navigate the challenges of dementia caregiving. Together, we can make a difference in the lives of those affected by this condition.
Barbara J. Huelat
Healthcare Design Specialist & Author
Championing compassionate care and innovative solutions for dementia.
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Barbara Huelat, a dynamic force in healthcare design, author, and speaker, shares her expertise in her latest publication, 'Taming the Chaos of Dementia.' With her profound understanding and passion for the subject, she offers practical wisdom on navigating dementia care with empathy and skill, transforming this complex challenge into an empowering journey. Explore Barbara's insights at barbarahuelat.com or call 703-795-1743 for an enriching experience.
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