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A Caregiver's Role at Each Stage of a Dementia Diagnosis

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Understanding Each Stage of Alzheimer's

When we hear the word Dementia, we can’t help but feel the worry that comes with the term. This condition, which includes Alzheimer’s Disease, is responsible for loss of memory and cognitive ability, and affects more than 6 million Americans.

We haven’t cured Alzheimer’s yet, but there is a greater understanding of the disease today, allowing caregivers to educate themselves and take more control over their loved ones’ health and aging process. 

The first step for any caregiver is understanding the stages of Alzheimer’s– early, middle, and late– and the symptoms associated with each.  

As the disease progresses through these stages, understanding how your role will change is imperative to providing the right care. 


Early Stage

In the early stage of Alzheimer’s, a person still functions independently, and symptoms may not be widely apparent.  This is the stage where you may start to notice the early warning signs, such as: 

  1. Memory loss that disrupts daily life
  2. Challenges in planning or solving problems 
  3. Difficulty completing familiar tasks
  4. Confusion with time or place 
  5. Trouble understanding visual images and spatial relationships  
  6. New problems with words (speaking or writing)
  7. Misplacing things and losing the ability to retrace steps
  8. Decreased or poor judgment 
  9. Withdrawal from work or social activities 
  10. Changes in mood or personality 


During the early stage, the main role for you as the caregiver is emotional support. 

  • Make it easier for your loved one to live well by helping them take control of their health and wellness and focus their energy on aspects of their lives that are most meaningful to them. 
  • Practice positive reinforcement; avoid pointing out insignificant behavior things which would increase stress.
  • NOTE: This is the ideal time to put legal, financial and end-of-life plans in place because the person with Alzheimer’s will be better able to participate in the decision making. 


Middle Stage

Middle-stage Alzheimer’s is typically the longest stage and can last for many years. During this stage, symptoms are more pronounced. Your loved one may confuse words, get frustrated or angry, and act in unexpected ways, such as refusing to bathe. Damage to nerve cells in the brain may also make it difficult for them to express thoughts and perform routine tasks without assistance. Those in the middle stage can still participate in daily activities, but the level of care they need increases.  


During the middle stage, the main role for you as the caregiver is to provideincreased attention to your loved one.

  • It is important to find out what your loved one can still do, or find ways to simplify tasks.  
  • Ensure you prioritize your own health and wellness, even as your loved one's disease progresses.
  • NOTE: As the need for more intensive care increases, you may want to consider respite care options so you can have a temporary break from caregiving. 

Late Stage

In late-stage Alzheimer’s, dementia symptoms are severe. Individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases, but communicating becomes difficult. As memory and cognitive skills continue to worsen, extensive care is needed.

In the late stage, your role as the caregiver is to preserve your loved one’s quality of life and dignity

  • Even though your loved one may not be able to initiate engagement as much during the late stage, they can still benefit from interaction with you or another loved one, or by listening to relaxing music. 
  • Engage in more frequent engagement with doctors, caregivers, and hospice workers.
  • NOTE: In this stage, you will want to use support services, such as hospice care. 


Other Helpful Tips

  • Have conversations about care in the early-stage when the person living with Alzheimer’s can be involved in the initial decisions.  
  • Whether it is in-home care, an adult day care center, respite care, or the final stages in hospice care, it is important to do research, understand what kind of care is required in each stage and know when care needs to become more intensive.  
  • Ask for referrals, whether they be from a doctor, other caregivers, local senior centers or your local Alzheimer’s Association.  
  • Call referrals and ask questions regarding qualifications, types of services offered, as well as the cost and hours of availability, to ensure everyone involved feels comfortable with the decisions made around care.  
  • Visit adult day centers and respite care providers and take a look around.
    • Are individuals involved in activities? 
    • What is your overall feeling about the environment?  
  • Work closely with providers and stay engaged in care to ensure all care needs are being met.


Important Resources

With Alzheimer’s diagnoses increasing, educating yourself about the signs and symptoms and understanding care requirements is now more important than ever. While it can feel paralyzing to receive this diagnosis, have a family member receive this diagnosis, or even approach the age when diagnosis is most common, information and support is out there. 

For immediate support or to learn more, contact your local Alzheimer’s Association through their 24/7 Helpline at 800-272-3900 or visiting ALZ.org

Brittany Haile

Brittany Haile is a volunteer for the Alzheimer's Association San Diego/Imperial. After experiencing first-hand the effects of her grandfather’s Alzheimer’s Disease diagnosis, Brittany dedicates her time to help raise awareness to find a cure.

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