The Center for Brain/Mind Medicine > Support & Education

Stages & Symptoms

What Changes Can I Expect?

Dementia affects a person’s ability to function in several ways, not just memory.  Attention, judgment, organization, perception, and language may all be impacted.  In general, you can expect certain changes at different stages of the disease: early, early middle, late middle, and late.  However, these stages are approximate.  Each person with dementia is an individual who will have their own pattern of progression.

As the person with dementia progresses through the stages of the illness, the caregiver experiences changes, too.  Your relationship with your person will change, as will how you provide care.  You will gradually take on more and more responsibility.

Think about your relationship’s starting point as a first step in anticipating your own care journey challenges.  Are you caring for a spouse, parent, grandparent, other relative, or friend?  How have roles and responsibilities existed in the relationship up to this point?  How natural is it for you to give help and for your person to receive help?  While you will draw on the strengths of the relationship throughout the disease, old conflicts may also persist.

Symptoms by Stage & Your Role


Dementia Stage

 

Symptoms

Support – Caregiver Role

Early: Mild

  • Functionally independent
  • Likely still travel or move about with supervision.
  • Cognitive symptoms are not widely apparent, but close family/friends may notice:
    – Increased forgetfulness
    – Decreased performance in demanding work           and social settings
    – Difficulty planning and organizing
    – Trouble finding words or recalling names
    – Losing or misplacing belongings

 

  • Focus on health and wellness.
  • Encourage participation in important decision-making (legal, financial, future care needs, and end of life).
  • Ask how person would like to be supported in more common challenges.
  • Break down more complex tasks (planning, using technology).
  • Use multi-step instructions if still appropriate.
  • Provide reminders.

 

Early Middle:  Mild to Moderate

 

  • Complex everyday tasks become more challenging.
  • Mood and personality changes may surface (depression, anxiety, apathy, irritability, and agitation).
  • Cognitive symptoms progress to include:
    – Difficulty remembering recent events and conversations
    – Trouble concentrating
    – Increasing difficulty and withdrawal in social situations
    – Trouble managing finances or traveling alone to new locations
  • Determine what the person can do.
  • Find ways to simplify tasks.
  • Create reliable routines.
  • Begin to be more directive.
  • Provide a combination of verbal and visual cues.
  • Learn about behavioral issues and skills for responding.

Late Middle: Moderate

  • Routine daily tasks and some personal care become more challenging.
  • Personality and behavioral changes (paranoia, delusions, compulsions) may arise.
  • More pronounced cognitive symptoms:
    – Trouble recalling personal history
    – May repeat favorite stories or make up                   stories to fill memory gaps
    – Increased word-finding difficulty that                       impacts ability to express ideas clearly
    – More difficulty finding their way around, even         in familiar places
    – May wander
    – Difficulty tracking date/time and may                       confuse family/friends with each other

 

  • Safety concerns are a higher priority.
  • Investigate strategies and technology to monitor wandering.
  • Use short verbal directions and demonstrations.
  • Reasoning may no longer work—try to join the person’s reality.
  • Consider getting care support and assistance.
  • Note any vision changes resulting in “tunnel vision.” Tips: approach from the front and/or announce yourself so as not to startle the person, pair visual cues with verbal cues.

 

 

End: Severe

 

  • Fully dependent on others for personal care
  • Cognitive symptoms limit awareness and communication
  • Quickly lose awareness of recent experiences as well as surroundings
  • Difficulty communicating
  • Changes in physical abilities, including walking, sitting, and (eventually) swallowing

 

  • 24/7 care is required.
  • Consider engaging with palliative care or hospice.
  • Tone of voice is more important than words.
  • Emotional tone will also be detected.
  • Physical guidance is the most effective support.
  • Ensure funeral and burial arrangements are in place.

Stages of Caregiver Change

While no one can predict exactly how dementia will unfold for your person, it can be helpful and empowering to learn what you can generally expect.  We’ve heard many caregivers talk about the changes they observed within themselves over the course of this experience.  Read more about the stages of change dementia caregivers reflect on by clicking here.

Learn More

Alzheimer’s Stages – Early, Middle, Late Dementia Symptoms – alz.org
The Seven Stages Of Dementia – dementia.org
The GEMS®: Brain Change Model – Positive Approach to Care – teepasnow.com