AFTD - The Association for Frontotemporal Degeneration · Title: Slide 1 Author: Elise Tarbi...
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Early Onset Dementia: Screening, Diagnosing and Then What?… Zeina Chemali, MD, MPH Director, Neuropsychiatry Clinics Massachusetts General Hospital Depts.Psychiatry and Neurology Harvard Medical School, Boston, USA
Transcript of AFTD - The Association for Frontotemporal Degeneration · Title: Slide 1 Author: Elise Tarbi...
Early Onset Dementia:
Screening, Diagnosing and
Then What?…
Zeina Chemali, MD, MPH
Director, Neuropsychiatry Clinics
Massachusetts General Hospital
Depts.Psychiatry and Neurology
Harvard Medical School, Boston, USA
Working EOD Group
Memory Disorders Unit-BWH*
Margarita Avila-Urizar, Data Programmer
Elise Tarbi, BA, Research Assistant
Stacey Schamber, LICSW
Jeffrey Robbins, LICSW
Diler Acar, MD (Behavioral Neurology)
Zeina Chemali*, MD,MPH (Neuro-Psychiatry)
Early Onset Dementia: Facts
Few studies listing country prevalence
In Japan: 42.3/100,000 (vascular 42.6%, AD (25.6%), TBI (7.1%), DLB and PD (6.2%), FTD (2.6%), others (16%) [Stroke, 2009]
In Europe: All dementia: 38-420/100,000
AD: 15.1-153/100,000
FTD : 4.0-15.4/100,000
[AD Europe, 2009]
What is Fronto-Temporal
Dementia?
FTD is a group of related conditions:
Progressive degeneration of the temporal and
frontal lobes.
Brain areas +++
decision-making
behavioral control
Emotion
language.
Disease Progression
Appears mid-40s to early-60s
Causes steady and gradual decline
Can last from 3-17 years from the first
symptom until death
Average duration of eight years after
diagnosis
Early Onset Dementia: The
Challenges
Difficult diagnosis to make and carry
Family issues: kids, young partnership
Impact on employment
Impact on finances
Impact on ancillary services offered
Impact on quality of life
Charts Data Review (2005-
2008)
N (85)
Mean Age (55.19)
F/M (50/35)
MMSE Initial (27.25) SD((3.34))
MMSE F/U (25.45) SD((4.51))
MMSE (NH) (25.67) SD((1.16))
Variable N Descriptive
Age (mean (SD)) 85 55.19 (7.51)
Age Groupings:
25-29.99
30-34.99
35-39.99
40-44.99
45-49.99
50-54.99
55-59.99
60-64.99
1
1
1
5
8
15
27
27
1.2%
1.2%
1.2%
5.9%
9.4%
17.6%
31.8%
31.8%
Gender:
Male
Female
35
50
41.2%
58.8%
SW Consult:
No
Yes
48
37
56.5%
43.5%
Home at diagnosis:
No
Yes
3
82
3.5%
96.5%
Last recorded location:
Home
Hospice
Nursing Home
Do not know
77
1
6
1
90.6%
1.2%
7.1%
1.2%
Variable N Descriptive
Diagnosis: Overall
ETOH
HIV
MS
Neoplasm
Neurodegenerative
AD
FTD
MCI
MIX
PCA
PD
Other
CNOS/Behcet
NPH
TBI
ADD+MDD
ADD
MDD
2
1
10
1
50
19
13
9
3
1
5
2
1
1
10
9
6
3
2.4%
1.2%
11.8%
1.2%
58.8%
2.4%
11.8%
10.6%
First MMSE (mean (SD)) 60 27.25 (3.34)
MMSE follow-up (1-2yrs) (mean (SD)) 20 25.45 (4.51)
MMSE follow-up (nursing home) (mean
(SD)
3 25.67 (1.16)
Variable N Descriptive
Work-up:
1
MRI
NP
2
MRI + NP
MRI + PET
MRI + SPECT
PET + NP
3
MRI + PET + NP
MRI + PET + SPECT
MRI + SPECT + NP
4
None
20
13
7
25
13
7
3
2
32
22
1
9
1
7
23.5%
29.4%
37.6%
1.2%
8.2%
MRI:
No
Yes
16
69
18.8%
81.2%
PET:
No
Yes
52
33
61.2%
38.8%
SPECT:
No
Yes
71
14
83.5%
16.5%
Neuropsych:
No
Yes
31
54
36.5%
63.5%
0
2
4
6
8
10
12
27
yrs
28
yrs
29
yrs
30
yrs
31
yrs
32
yrs
33
yrs
34
yrs
35
yrs
36
yrs
37
yrs
38
yrs
39
yrs
40
yrs
41
yrs
42
yrs
43
yrs
44
yrs
45
yrs
46
yrs
47
yrs
48
yrs
49
yrs
50
yrs
51
yrs
52
yrs
53
yrs
54
yrs
55
yrs
56
yrs
57
yrs
58
yrs
59
yrs
60
yrs
61
yrs
62
yrs
63
yrs
64
yrs
Age
# Pts
0
10
20
30
40
50
60
Male Female
Gender
Gender
0
10
20
30
40
50
60
MS Neurodegenerative TBI Other
Diagnosis
# Pts
0
2
4
6
8
10
12
14
16
18
20
AD FTD MCI MIX PCA PD
Neurodegenerative Diagnosis
# Pts
0
5
10
15
20
25
15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30
Initial MMSE
# Pts
0
1
2
3
4
5
6
15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30
Follow-up MMSE
# Pts
0
10
20
30
40
50
60
Yes No
Work-Up (yes/no)
# Pts
0
2
4
6
8
10
12
14
Only MRI Only PET/SPECT Only NP
Work-Up (types)
# Pts
0
10
20
30
40
50
60
No Yes
Social Work Consult
# Pts
0
5
10
15
20
25
30
35
40
Yes No
Social Work Intervention
# Pts
0
5
10
15
20
25
30
35
40
45
Only ChEAI Only Antidepressants Only Neuroleptics Combination
Medication, Table #1
# Pts
0
2
4
6
8
10
12
14
Only ChEAI Only Antidepressants Only Neuroleptics Combination
AD
FTD
MCI
MIX
PCA
PD
Medication by Neurodegenerative Diagnosis
0
2
4
6
8
10
12
14
ChEAI + MMT Any Med + Neuroleptics ChEAI + MMT + Neurolep
Medication, Table #2
# Pts
0
10
20
30
40
50
60
70
80
90
No Yes
Home at Diagnosis
# Pts
0
10
20
30
40
50
60
70
80
90
No Yes
Home Now
# Pts
Time (years)
Am
ou
nt
of
Care
(h
ou
rs)
TBI
AD
FTD
MS
Amount of Medical Care over Time
Caregiver Burden over Time
Time (years)
Am
ou
nt
of
Care
(h
ou
rs)
TBI
AD
FTD
MS
Current State of Affairs in
Massachusetts
428 Nursing Homes
128 Dementia Units
213 Assisted Living Residences
102 offer some sort of special care
If able to pay $$ -----most will accommodate
[Benchmark Group]
Current State of Affairs in
Massachusetts
New legislature being proposed
Help family access Mass Health quickly
[even if spouse has some money]
Can use PCA and move to NH [covered by
Mass Health]
EOD is an inclusion criteria
Mass Health and Common
Health Care: Who is eligible?
*Cut-off Mass Health :
1201$/mo for Individual
1616 $/mo for Couple
*Cut-off Common Health Care:
1355$/mo for Individual
1823$/mo for Couple
Assistance Programs
Updated Data
Sept 2010
Long Term Care Options Counseling
Develop Future Plans
ASAP If Mass. Health, PCA
State Executive Office of Elders Affairs
[State Funding]
27 Aging Service Access Points (ASAP)
[Regional Agencies]
Local ASAP
Meals Personal Care Funding for Adult
Health
MRC Home Care Assistance
Family Caregiver Program
[Federal Funding]
Can serve age < 60 yrs. if AD, FTD, DLB, but:
- Sliding scale
- Income guidelines change overtime
- “Place out” Private homecare
Does not serve: TBI, MS, others
Can serve
people 18-59
yrs. w/
disability,
living alone
Not
accepting
referrals and
$$$
Can serve people:
- > 60 yrs.
- Any AD
- Grandparent caring
for grandchildren
Not
accepting
referrals
Can
serve any
elder +
disabled
Concerned?… We are!!
Major areas of concerns
1. Extensive $$ work-up, combo meds, SW consults and yet NO tangible change in what we are able to do so far…
2. Access to services
3. Care giving- YOU
4. Family burden and responsibility
5. Driving?
6. ADL’s and IADL’s : The list is long…
Thank you!
