Early onset dementia

We’re all in this for good.

By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

What is early onset dementia?

Early onset dementia is the term used when Alzheimer's disease is diagnosed before the age of 65. Approximately half of the cases of early onset Alzheimer's disease are Familial Alzheimer's disease, where a genetic predisposition leads to the disease.

Common symptoms reported by people with early onset dementia

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
Last updated:

Treatments taken by people with early onset dementia

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Aricept)
Type
Prescription Drug
How many have tried
3
Tried for
early onset dementia (3)
Treatment name(s)

(Xanax)
Type
Prescription Drug
How many have tried
2
Tried for
anxious mood (2)
Treatment name(s)

(Namenda)
Type
Prescription Drug
How many have tried
2
Tried for
early onset dementia (2)
Treatment name(s)

(Tylenol)
Type
Over the Counter Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)
Type
Psychotherapy
How many have tried
1
Tried for
depressed mood (1)
Treatment name(s)

(Flexeril)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)
Type
Physical Therapy
How many have tried
1
Tried for
anxious mood (1)
Treatment name(s)

(CVS Fish Oil)
Type
Supplement
How many have tried
1
Tried for
early onset dementia (1)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Cannabidiol/Tetrahydrocannabinol Balanced Mixture)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)

Data from patients with early onset dementia, who reported starting treatments within the last 5 years.
Last updated:

Compare treatments taken by people with early onset dementia

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Aricept)
Perceived effectiveness
No evaluations
Side effects
Total evaluations
2
Tried for
early onset dementia (3)
Treatment name(s)

(Xanax)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
constipation
Total evaluations
1
Tried for
anxious mood (2)
Treatment name(s)

(Namenda)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
early onset dementia (2)
Treatment name(s)

(Tylenol)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
depressed mood (1)
Treatment name(s)

(Flexeril)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
anxious mood (1)
Treatment name(s)

(CVS Fish Oil)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
early onset dementia (1)
Treatment name(s)

(Neurontin)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)

(Cannabidiol/Tetrahydrocannabinol Balanced Mixture)
Perceived effectiveness
No evaluations
Side effects
improved cognition rebound headaches
Total evaluations
2
Tried for
pain (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with early onset dementia, who reported starting treatments within the last 5 years.
Last updated:

Who has early onset dementia on PatientsLikeMe?


Age
Age Proportion # of patients
<20 0
20s 6
30s 11
40s 17
50s 38
60s 41
70+ 40
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 0
20-29 years 6
30-39 years 11
40-49 years 12
50-59 years 22
60-69 years 8
70+ years 1

Sex

Distribution of sex

61% Female
39% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 53
Not Diagnosed 21

These charts show data from early onset dementia patients who have completed their condition history
Last updated: