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!