Down Syndrome and Alzheimer’s Disease in Grand Rapids, Michigan

Alzheimer’s disease is the most common cause of dementia in adults, both in the general population and in people with Down syndrome. In individuals with Down syndrome, Alzheimer’s disease tends to occur more frequently and at a younger age than in the general population. For families in Grand Rapids, Michigan, understanding this connection can help with early detection, planning, and accessing local resources.

How Down Syndrome and Alzheimer’s Disease Are Connected

People with Down syndrome have three copies of chromosome 21 instead of two. This extra genetic material is at the center of the link between Down syndrome and Alzheimer’s disease.

One important gene on chromosome 21 is the amyloid precursor protein (APP) gene. APP is involved in the formation of the abnormal protein deposits (amyloid plaques and tangles) typically seen in the brains of people with Alzheimer’s disease.

  • Having three copies of the APP gene can lead to excess production of APP.
  • This may speed up the brain changes that are characteristic of Alzheimer’s disease in people with Down syndrome.

Research has shown that by around age 40, almost all people with Down syndrome have brain changes typical of Alzheimer’s disease when viewed under a microscope. However, this does not mean that everyone with Down syndrome will develop dementia symptoms.

How Common Is Alzheimer’s Disease in People with Down Syndrome?

Even though brain changes are often present by age 40, clinical dementia is not inevitable.

Current research suggests:

  • About 50% of people with Down syndrome will develop clinical symptoms of Alzheimer’s disease by age 60.
  • The average age of diagnosis of Alzheimer’s dementia in people with Down syndrome is around 55 years.

For families in Grand Rapids and West Michigan, this means that regular monitoring from middle adulthood is especially important.

Early Detection and Assessment in Grand Rapids, MI

When to Start Screening

Health professionals generally recommend that adults with Down syndrome begin having baseline functional assessments around age 40, followed by annual assessments. This helps track changes over time and identify possible early signs of dementia.

If you live in the Grand Rapids area, you can discuss this screening with:

  • Your primary care physician (PCP)
  • A developmental medicine specialist
  • A neurologist familiar with intellectual and developmental disabilities
  • Local systems like Spectrum Health, Trinity Health Grand Rapids, Metro Health – University of Michigan Health, or Mercy Health clinics

What Should Be Assessed?

A thorough assessment for Alzheimer’s disease in a person with Down syndrome should look at multiple areas of functioning, including:

  • Cognition, memory, and executive function
    • New difficulty following routines
    • Trouble remembering recent events or familiar people
  • Behavior and personality
    • Increased irritability, withdrawal, or anxiety
    • Changes in sleep or appetite
  • Communication
    • Reduced vocabulary
    • Trouble understanding or expressing needs
  • Adaptive functioning (daily living skills)
    • Decline in dressing, bathing, cooking, or managing money
  • Ambulation and motor skills
    • New problems with balance or walking
    • Increased falls
  • General decline in established skills
    • Losing skills that were previously stable for years

Family members, caregivers, and staff in group homes or supported living settings in Grand Rapids should document changes and share them with the healthcare provider at each visit.

Other Conditions That Can Mimic Dementia

Not every decline in function is caused by Alzheimer’s disease. Adults with Down syndrome are at higher risk for several treatable conditions that can look like dementia or make it worse.

Common issues include:

  • Hypothyroidism (underactive thyroid)
  • Sleep apnea (very common in Down syndrome, and can worsen in Michigan’s winter months when respiratory infections are more frequent)
  • Depression and other mood disorders
  • Sensory impairments
    • Hearing loss (often underdiagnosed)
    • Vision problems such as cataracts
  • Medication side effects or drug interactions
  • Uncontrolled pain or chronic medical conditions

Because Michigan’s cold winters and frequent respiratory illnesses can affect sleep, breathing, and mood, it’s especially important in Grand Rapids to have regular check-ups, including:

  • Thyroid function tests
  • Sleep studies if snoring or pauses in breathing are noticed
  • Hearing and vision evaluations
  • Medication reviews

Treating these conditions can significantly improve thinking, mood, and daily functioning, and may prevent misdiagnosis of Alzheimer’s disease.

Living Well With Down Syndrome and Reducing Dementia Risk

There is currently no proven way to prevent the brain changes associated with Alzheimer’s disease in people with Down syndrome. However, a full, healthy, and active lifestyle may help reduce the risk of developing dementia or slow its progression.

Healthy Lifestyle Strategies in Grand Rapids

  • Stay physically active year-round
    • Use indoor walking tracks, malls, or fitness centers during snowy winters.
    • Take advantage of Grand Rapids parks, trails, and accessible recreation in spring, summer, and fall.
  • Engage in social and community activities
    • Participate in local disability support groups, Special Olympics Michigan programs, or day programs.
    • Stay involved with family, friends, faith communities, and recreational groups.
  • Keep the mind active
    • Puzzles, reading, music, arts and crafts, and structured routines can support brain health.
    • Local libraries and community centers in Grand Rapids often offer accessible programs.
  • Maintain good nutrition and regular medical care
    • Balanced diet with fruits, vegetables, whole grains, and lean protein.
    • Routine visits with a primary care provider and specialists familiar with Down syndrome.
  • Support emotional health
    • Monitor for signs of depression or anxiety.
    • Seek counseling or behavioral health services through local providers or hospital systems if needed.

When to Seek Medical Help

Contact a doctor if you notice new or worsening:

  • Changes in mood or personality
  • Increased forgetfulness or confusion
  • Difficulty with communication
  • Loss of daily living skills (dressing, bathing, eating, using the bathroom)
  • Changes in walking, balance, or coordination
  • Withdrawal from social activities or loss of interest in usual hobbies

Ask for a referral to a specialist, such as:

  • A neurologist with experience in dementia
  • A geriatrician (doctor specializing in older adults)
  • A developmental medicine or neuropsychology clinic that works with adults with Down syndrome

In Grand Rapids, these services may be available through major health systems like Spectrum Health, Trinity Health Grand Rapids, Metro Health, or Mercy Health, as well as independent clinics.

Local Resources in Grand Rapids, Michigan

If you are caring for an adult with Down syndrome and are concerned about Alzheimer’s disease, you do not have to navigate this alone. Grand Rapids and Kent County offer several resources:

Medical and Clinical Support

  • Primary Care Provider (PCP) or Family Doctor
    • First point of contact for evaluation and referrals.
  • Local Community Health Centers
    • Offer primary care, behavioral health, and referral services.
  • Spectrum Health, Trinity Health Grand Rapids, Metro Health, Mercy Health
    • Hospital systems with neurology, geriatrics, and developmental services.

Public Health and Community Support

  • Kent County Health Department
    • Information on local health programs, vaccinations, and chronic disease support.
  • Grand Rapids Public Health and Community Services
    • May offer disability support connections and caregiver resources.

Down Syndrome and Dementia Support

  • Down Syndrome Association of West Michigan (DSAWM)
    • Local support, education, and community activities for individuals with Down syndrome and their families.
  • Alzheimer’s Association – Greater Michigan Chapter
    • Education, support groups, and a 24/7 helpline for dementia concerns.
  • National Dementia Helpline / Alzheimer’s Association Helpline
    • Available 24/7 for questions and support about dementia and caregiving.

Key Takeaways for Grand Rapids Families

  • People with Down syndrome are at higher risk of Alzheimer’s disease and at a younger age than the general population.
  • Not everyone with Down syndrome will develop dementia, even if brain changes are present.
  • Annual functional assessments from age 40 are important to detect early changes.
  • Many treatable conditions (thyroid problems, sleep apnea, depression, sensory issues, medication effects) can mimic dementia.
  • A healthy, active, socially engaged lifestyle and regular medical care can support brain health.
  • Grand Rapids offers strong healthcare systems and community resources to help families manage Down syndrome and Alzheimer’s disease together.

If you live in the Grand Rapids area and are worried about possible signs of Alzheimer’s disease in a person with Down syndrome, schedule an appointment with their doctor or local community health center and ask about a comprehensive dementia evaluation and local support services.