frontotemporal dementia and primary progressive … · 2019-10-19 · orthwestern u niversity f...
TRANSCRIPT
RegistrationSpace is limited. Please register by March 1 at
www.brain.northwestern.edu/events/ftdppa.html.
CostPrepaid registration by March 1
$35 per person
$75 for families of three or more
Payment after March 1
$40 per person
$85 for families of three or more
Scholarships are available.
Contact [email protected]
for more information.
EAST CHICAGO AVENUE
EAST ERIE STREET
EAST ONTARIO STREET
ST.
CLA
IRS
TR
EE
T
NO
RT
HM
ICH
IGA
NA
VE
NU
E
NO
RT
HFA
IRB
AN
KS
CO
UR
T
NO
RT
HM
cCLU
RG
CO
UR
T
P
P
P
P
Northwestern Memorial Hospital
INN
ER LA
KE S
HO
RE D
RIVE
NO
RTH
LAK
ES
HO
RE
DR
IVE
NORTH
Robert H. LurieMedical Research Center
NO
RTH
EAST SUPERIOR STREET
EAST HURON STREET
Northwestern Memorial Hospital garage
©2011 Northwestern University. All rights reserved. Produced by University Relations. 1-11/1.5M/AE-VL/1002-1Northwestern University is an equal opportunity, affirmative action educator and employer.
CO
GN
ITIV
E N
EURO
LOG
Y AN
D A
LZH
EIM
ER’S
DIS
EASE
CEN
TER
NO
RT
HW
ES
TE
RN
UN
IVE
RS
ITY
FE
INB
ER
G S
CH
OO
L O
F M
ED
ICIN
E
320
East
Sup
erio
r Str
eet,
Sear
le 1
1-45
3C
hica
go, I
llino
is 60
611-
2923
Non
prof
it O
rgan
izatio
nU
.S. P
osta
ge
PAID
Evan
ston,
Illin
ois
COGNITIVE NEUROLOGY AND ALZHEIMER’S DISEASE CENTER
FRONTOTEMPORAL DEMENTIA AND PRIMARY PROGRESSIVE APHASIA
CAREGIVER EDUCATION and SUPPORT CONFERENCE
Cosponsored by the Association for Frontotemporal Dementias and the National Aphasia Association
Monday, March 21, 2011
The Robert H. Lurie Medical Research Center of Northwestern University
Hughes Auditorium 303 East Superior Street, Chicago
Local lodging 312-926-ROOM
Travel or respite financial assistance
Association for Frontotemporal
Dementias
267-514-7221 or
866-507-7222 (toll-free)
Questions?www.brain.northwestern.edu
/events/ftdppa.html
312-908-9023
Discounted parking Northwestern Memorial Hospital garage 222 East Huron Street
The Robert H. Lurie Medical Research Center of Northwestern University 303 East Superior Street
MONDAY, MARCH 21, SCHEDULE
7:30–8:30 a.m. Registration and Vendor Fair
8:30–9 a.m. Welcome
Marsel Mesulam, MD, CNADC director
Darby Morhardt, MSW, LCSW, CNADC education director
Christina Wieneke, BA, CNADC research project manager
9–9:15 a.m. Opening RemarksSharon Denny, MA, Association for Frontotemporal Dementias (AFTD)
Ellayne Ganzfried, MS, CCC-SLP, National Aphasia Association (NAA)
9:15–9:55 a.m. Keynote Address: “Perspectives on FTD and PPA”Bradley F. Boeve, MD, professor of neurology, Mayo Clinic, Rochester
9:55–10:15 a.m. “Assessing and Treating Mood and Behavioral Symptoms in FTD and PPA”.
Deborah Reed, MD, assistant professor of psychiatry, Northwestern University
10:15–10:30 a.m. Break and Vendor Fair
10:30 a.m.–noon Question-and-Answer Session with Dr. Boeve, Dr. Reed, a PPA caregiver,
and an FTD caregiver
noon–1 p.m. Lunch and Vendor Fair
1:15–2:15 p.m. Breakout Session 1
2:30–3:30 p.m. Breakout Session 2
3:45–4:15 p.m. Closing Plenary: “Affirm Yourself for Caregiver Challenges”Janet Edmunson, MEd, author of Finding
Meaning with Charles: Caregiving with
Love through a Degenerative Disease
1) Newly Diagnosed FTD A new FTD diagnosis brings on feel-ings of devastating loss and uncertainty. Families may feel overwhelmed trying to manage the personality and behav-ioral changes as they search for guidance about what to expect, how to plan for the future, and what living with FTD will be like. This group will focus on the experi-ence of a new diagnosis, the first steps to take, and where to find ongoing guidance, resources, and support. It will explore both immediate concerns and longer-term issues about how this illness will affect a loved one and a family.
2) Newly Diagnosed PPAFamilies may be uncertain about what to do next when a person is diagnosed with PPA. How should the frustrations and struggles resulting from changing com-munication abilities be addressed? There are important considerations for the pres-ent and the future that families should discuss early on. This group will focus on both the first steps and where to find ongoing guidance, resources, and support for the person with PPA and the family.
3) Legal PlanningOnce a person is diagnosed with a demen-tia, family and friends should help him or her to make legal plans early on so that, if possible, the person is able to participate. Lack of insight can result in the person’s being unable or resistant to making these plans. In some cases, guardianship is necessary. Making legal plans for health care and long-term care includes discuss-ing finances and property and naming an-other person to make decisions on behalf of the person. This group will discuss what families should know about legal planning and how to begin this process.
4) Managing BehaviorsThe range of possible new behaviors of persons with bv (behavioral variant) FTD may be difficult for families to manage. This group will discuss environmental modifications, psychosocial approaches, and pharmacological interventions for inappropriate, impulsive, aggressive, com-pulsive, paranoid, and other challenging behaviors. It will also explore how these behaviors affect the family and how the family can cope.
5) Communication Challenges in PPAThe primary goal of speech and language therapy for PPA is to improve a person’s ability to communicate by helping him or her to use remaining language abilities, compensate for language problems, and learn other methods of communication. This group will discuss alternative and augmentative forms of communication, the use of low- and high-tech commu-nication devices, and other methods of supporting language abilities.
6) Families with Children and TeensSince PPA and FTD have a young average age of onset, a parent may become affected when children are still living at home. The stress brought on by the diagnosis is profound; families face uncertainty about not only the disease, but also its effect on children. This group will explore the ex-periences of children and teens who have parents with FTD or PPA.
7) Planning for Future and Palliative Care Planning for future care can feel compli-cated and overwhelming for caregivers. There is a great deal to consider in explor-ing what care options work best for the person diagnosed and his or her family. This group will provide a comprehensive review of care options throughout the course of the disease. It will also review palliative approaches to care, a comfort-based approach that focuses on maximiz-ing quality of life.
8) Starting a Support Group in Your AreaSupport groups offer a safe environment in which family caregivers share their experience with others who truly under-stand. There is a need for more support groups specific to FTD and PPA. This group will discuss how — with help from the AFTD, the NAA, and the Alzheimer’s Association — to begin, sustain, and maintain a group specifically for caregivers of people with FTD or PPA.
9) Genetics and FTD/PPAFTD and PPA can be described as inher-ited, familial, or sporadic. In inherited cases, each child or sibling of the person with the disease has a 50 percent chance of developing it. In a familial case, family members of an affected individual have an increased risk of developing the disease, although this increase is not well defined. The majority of FTD/PPA cases are sporadic, meaning the disorder develops by chance and the children or siblings of the affected individual do not have an increased risk for developing the disorder. This group will discuss the genetics of FTD and PPA, including what we know and what we still hope to uncover through future research.
AFTERNOON BREAKOUT SESSIONS FOR CAREGIVERS
C A R E G I V E R S AT T E N D I N G T H E C O N F E R E N C E M AY C H O O S E T O
AT T E N D T W O B R E A K O U T S E S S I O N S A B O U T A S P E C I F I C P PA
A N D F T D T O P I C .
MONDAY, MARCH 21, SCHEDULE
7:30–8:30 a.m. Registration and Vendor Fair
8:30–9 a.m. Welcome
Marsel Mesulam, MD, CNADC director
Darby Morhardt, MSW, LCSW, CNADC education director
Christina Wieneke, BA, CNADC research project manager
9–9:15 a.m. Opening RemarksSharon Denny, MA, Association for Frontotemporal Dementias (AFTD)
Ellayne Ganzfried, MS, CCC-SLP, National Aphasia Association (NAA)
9:15–9:55 a.m. Keynote Address: “Perspectives on FTD and PPA”Bradley F. Boeve, MD, professor of neurology, Mayo Clinic, Rochester
9:55–10:15 a.m. “Assessing and Treating Mood and Behavioral Symptoms in FTD and PPA”.
Deborah Reed, MD, assistant professor of psychiatry, Northwestern University
10:15–10:30 a.m. Break and Vendor Fair
10:30 a.m.–noon Question-and-Answer Session with Dr. Boeve, Dr. Reed, a PPA caregiver,
and an FTD caregiver
noon–1 p.m. Lunch and Vendor Fair
1:15–2:15 p.m. Breakout Session 1
2:30–3:30 p.m. Breakout Session 2
3:45–4:15 p.m. Closing Plenary: “Affirm Yourself for Caregiver Challenges”Janet Edmunson, MEd, author of Finding
Meaning with Charles: Caregiving with
Love through a Degenerative Disease
1) Newly Diagnosed FTD A new FTD diagnosis brings on feel-ings of devastating loss and uncertainty. Families may feel overwhelmed trying to manage the personality and behav-ioral changes as they search for guidance about what to expect, how to plan for the future, and what living with FTD will be like. This group will focus on the experi-ence of a new diagnosis, the first steps to take, and where to find ongoing guidance, resources, and support. It will explore both immediate concerns and longer-term issues about how this illness will affect a loved one and a family.
2) Newly Diagnosed PPAFamilies may be uncertain about what to do next when a person is diagnosed with PPA. How should the frustrations and struggles resulting from changing com-munication abilities be addressed? There are important considerations for the pres-ent and the future that families should discuss early on. This group will focus on both the first steps and where to find ongoing guidance, resources, and support for the person with PPA and the family.
3) Legal PlanningOnce a person is diagnosed with a demen-tia, family and friends should help him or her to make legal plans early on so that, if possible, the person is able to participate. Lack of insight can result in the person’s being unable or resistant to making these plans. In some cases, guardianship is necessary. Making legal plans for health care and long-term care includes discuss-ing finances and property and naming an-other person to make decisions on behalf of the person. This group will discuss what families should know about legal planning and how to begin this process.
4) Managing BehaviorsThe range of possible new behaviors of persons with bv (behavioral variant) FTD may be difficult for families to manage. This group will discuss environmental modifications, psychosocial approaches, and pharmacological interventions for inappropriate, impulsive, aggressive, com-pulsive, paranoid, and other challenging behaviors. It will also explore how these behaviors affect the family and how the family can cope.
5) Communication Challenges in PPAThe primary goal of speech and language therapy for PPA is to improve a person’s ability to communicate by helping him or her to use remaining language abilities, compensate for language problems, and learn other methods of communication. This group will discuss alternative and augmentative forms of communication, the use of low- and high-tech commu-nication devices, and other methods of supporting language abilities.
6) Families with Children and TeensSince PPA and FTD have a young average age of onset, a parent may become affected when children are still living at home. The stress brought on by the diagnosis is profound; families face uncertainty about not only the disease, but also its effect on children. This group will explore the ex-periences of children and teens who have parents with FTD or PPA.
7) Planning for Future and Palliative Care Planning for future care can feel compli-cated and overwhelming for caregivers. There is a great deal to consider in explor-ing what care options work best for the person diagnosed and his or her family. This group will provide a comprehensive review of care options throughout the course of the disease. It will also review palliative approaches to care, a comfort-based approach that focuses on maximiz-ing quality of life.
8) Starting a Support Group in Your AreaSupport groups offer a safe environment in which family caregivers share their experience with others who truly under-stand. There is a need for more support groups specific to FTD and PPA. This group will discuss how — with help from the AFTD, the NAA, and the Alzheimer’s Association — to begin, sustain, and maintain a group specifically for caregivers of people with FTD or PPA.
9) Genetics and FTD/PPAFTD and PPA can be described as inher-ited, familial, or sporadic. In inherited cases, each child or sibling of the person with the disease has a 50 percent chance of developing it. In a familial case, family members of an affected individual have an increased risk of developing the disease, although this increase is not well defined. The majority of FTD/PPA cases are sporadic, meaning the disorder develops by chance and the children or siblings of the affected individual do not have an increased risk for developing the disorder. This group will discuss the genetics of FTD and PPA, including what we know and what we still hope to uncover through future research.
AFTERNOON BREAKOUT SESSIONS FOR CAREGIVERS
C A R E G I V E R S AT T E N D I N G T H E C O N F E R E N C E M AY C H O O S E T O
AT T E N D T W O B R E A K O U T S E S S I O N S A B O U T A S P E C I F I C P PA
A N D F T D T O P I C .
MONDAY, MARCH 21, SCHEDULE
7:30–8:30 a.m. Registration and Vendor Fair
8:30–9 a.m. Welcome
Marsel Mesulam, MD, CNADC director
Darby Morhardt, MSW, LCSW, CNADC education director
Christina Wieneke, BA, CNADC research project manager
9–9:15 a.m. Opening RemarksSharon Denny, MA, Association for Frontotemporal Dementias (AFTD)
Ellayne Ganzfried, MS, CCC-SLP, National Aphasia Association (NAA)
9:15–9:55 a.m. Keynote Address: “Perspectives on FTD and PPA”Bradley F. Boeve, MD, professor of neurology, Mayo Clinic, Rochester
9:55–10:15 a.m. “Assessing and Treating Mood and Behavioral Symptoms in FTD and PPA”.
Deborah Reed, MD, assistant professor of psychiatry, Northwestern University
10:15–10:30 a.m. Break and Vendor Fair
10:30 a.m.–noon Question-and-Answer Session with Dr. Boeve, Dr. Reed, a PPA caregiver,
and an FTD caregiver
noon–1 p.m. Lunch and Vendor Fair
1:15–2:15 p.m. Breakout Session 1
2:30–3:30 p.m. Breakout Session 2
3:45–4:15 p.m. Closing Plenary: “Affirm Yourself for Caregiver Challenges”Janet Edmunson, MEd, author of Finding
Meaning with Charles: Caregiving with
Love through a Degenerative Disease
1) Newly Diagnosed FTD A new FTD diagnosis brings on feel-ings of devastating loss and uncertainty. Families may feel overwhelmed trying to manage the personality and behav-ioral changes as they search for guidance about what to expect, how to plan for the future, and what living with FTD will be like. This group will focus on the experi-ence of a new diagnosis, the first steps to take, and where to find ongoing guidance, resources, and support. It will explore both immediate concerns and longer-term issues about how this illness will affect a loved one and a family.
2) Newly Diagnosed PPAFamilies may be uncertain about what to do next when a person is diagnosed with PPA. How should the frustrations and struggles resulting from changing com-munication abilities be addressed? There are important considerations for the pres-ent and the future that families should discuss early on. This group will focus on both the first steps and where to find ongoing guidance, resources, and support for the person with PPA and the family.
3) Legal PlanningOnce a person is diagnosed with a demen-tia, family and friends should help him or her to make legal plans early on so that, if possible, the person is able to participate. Lack of insight can result in the person’s being unable or resistant to making these plans. In some cases, guardianship is necessary. Making legal plans for health care and long-term care includes discuss-ing finances and property and naming an-other person to make decisions on behalf of the person. This group will discuss what families should know about legal planning and how to begin this process.
4) Managing BehaviorsThe range of possible new behaviors of persons with bv (behavioral variant) FTD may be difficult for families to manage. This group will discuss environmental modifications, psychosocial approaches, and pharmacological interventions for inappropriate, impulsive, aggressive, com-pulsive, paranoid, and other challenging behaviors. It will also explore how these behaviors affect the family and how the family can cope.
5) Communication Challenges in PPAThe primary goal of speech and language therapy for PPA is to improve a person’s ability to communicate by helping him or her to use remaining language abilities, compensate for language problems, and learn other methods of communication. This group will discuss alternative and augmentative forms of communication, the use of low- and high-tech commu-nication devices, and other methods of supporting language abilities.
6) Families with Children and TeensSince PPA and FTD have a young average age of onset, a parent may become affected when children are still living at home. The stress brought on by the diagnosis is profound; families face uncertainty about not only the disease, but also its effect on children. This group will explore the ex-periences of children and teens who have parents with FTD or PPA.
7) Planning for Future and Palliative Care Planning for future care can feel compli-cated and overwhelming for caregivers. There is a great deal to consider in explor-ing what care options work best for the person diagnosed and his or her family. This group will provide a comprehensive review of care options throughout the course of the disease. It will also review palliative approaches to care, a comfort-based approach that focuses on maximiz-ing quality of life.
8) Starting a Support Group in Your AreaSupport groups offer a safe environment in which family caregivers share their experience with others who truly under-stand. There is a need for more support groups specific to FTD and PPA. This group will discuss how — with help from the AFTD, the NAA, and the Alzheimer’s Association — to begin, sustain, and maintain a group specifically for caregivers of people with FTD or PPA.
9) Genetics and FTD/PPAFTD and PPA can be described as inher-ited, familial, or sporadic. In inherited cases, each child or sibling of the person with the disease has a 50 percent chance of developing it. In a familial case, family members of an affected individual have an increased risk of developing the disease, although this increase is not well defined. The majority of FTD/PPA cases are sporadic, meaning the disorder develops by chance and the children or siblings of the affected individual do not have an increased risk for developing the disorder. This group will discuss the genetics of FTD and PPA, including what we know and what we still hope to uncover through future research.
AFTERNOON BREAKOUT SESSIONS FOR CAREGIVERS
C A R E G I V E R S AT T E N D I N G T H E C O N F E R E N C E M AY C H O O S E T O
AT T E N D T W O B R E A K O U T S E S S I O N S A B O U T A S P E C I F I C P PA
A N D F T D T O P I C .
RegistrationSpace is limited. Please register by March 1 at
www.brain.northwestern.edu/events/ftdppa.html.
CostPrepaid registration by March 1
$35 per person
$75 for families of three or more
Payment after March 1
$40 per person
$85 for families of three or more
Scholarships are available.
Contact [email protected]
for more information.
EAST CHICAGO AVENUE
EAST ERIE STREET
EAST ONTARIO STREET
ST.
CLA
IRS
TR
EE
T
NO
RT
HM
ICH
IGA
NA
VE
NU
E
NO
RT
HFA
IRB
AN
KS
CO
UR
T
NO
RT
HM
cCLU
RG
CO
UR
T
P
P
P
P
Northwestern Memorial Hospital
INN
ER LA
KE S
HO
RE D
RIVE
NO
RTH
LAK
ES
HO
RE
DR
IVE
NORTH
Robert H. LurieMedical Research Center
NO
RTH
EAST SUPERIOR STREET
EAST HURON STREET
Northwestern Memorial Hospital garage
©2011 Northwestern University. All rights reserved. Produced by University Relations. 1-11/1.5M/AE-VL/1002-1Northwestern University is an equal opportunity, affirmative action educator and employer.
CO
GN
ITIV
E N
EURO
LOG
Y AN
D A
LZH
EIM
ER’S
DIS
EASE
CEN
TER
NO
RT
HW
ES
TE
RN
UN
IVE
RS
ITY
FE
INB
ER
G S
CH
OO
L O
F M
ED
ICIN
E
320
East
Sup
erio
r Str
eet,
Sear
le 1
1-45
3C
hica
go, I
llino
is 60
611-
2923
Non
prof
it O
rgan
izatio
nU
.S. P
osta
ge
PAID
Evan
ston,
Illin
ois
COGNITIVE NEUROLOGY AND ALZHEIMER’S DISEASE CENTER
FRONTOTEMPORAL DEMENTIA AND PRIMARY PROGRESSIVE APHASIA
CAREGIVER EDUCATION and SUPPORT CONFERENCE
Cosponsored by the Association for Frontotemporal Dementias and the National Aphasia Association
Monday, March 21, 2011
The Robert H. Lurie Medical Research Center of Northwestern University
Hughes Auditorium 303 East Superior Street, Chicago
Local lodging 312-926-ROOM
Travel or respite financial assistance
Association for Frontotemporal
Dementias
267-514-7221 or
866-507-7222 (toll-free)
Questions?www.brain.northwestern.edu
/events/ftdppa.html
312-908-9023
Discounted parking Northwestern Memorial Hospital garage 222 East Huron Street
The Robert H. Lurie Medical Research Center of Northwestern University 303 East Superior Street
RegistrationSpace is limited. Please register by March 1 at
www.brain.northwestern.edu/events/ftdppa.html.
CostPrepaid registration by March 1
$35 per person
$75 for families of three or more
Payment after March 1
$40 per person
$85 for families of three or more
Scholarships are available.
Contact [email protected]
for more information.
EAST CHICAGO AVENUE
EAST ERIE STREET
EAST ONTARIO STREET
ST.
CLA
IRS
TR
EE
T
NO
RT
HM
ICH
IGA
NA
VE
NU
E
NO
RT
HFA
IRB
AN
KS
CO
UR
T
NO
RT
HM
cCLU
RG
CO
UR
T
P
P
P
P
Northwestern Memorial Hospital
INN
ER LA
KE S
HO
RE D
RIVE
NO
RTH
LAK
ES
HO
RE
DR
IVE
NORTH
Robert H. LurieMedical Research Center
NO
RTH
EAST SUPERIOR STREET
EAST HURON STREET
Northwestern Memorial Hospital garage
©2011 Northwestern University. All rights reserved. Produced by University Relations. 1-11/1.5M/AE-VL/1002-1Northwestern University is an equal opportunity, affirmative action educator and employer.
CO
GN
ITIV
E N
EURO
LOG
Y AN
D A
LZH
EIM
ER’S
DIS
EASE
CEN
TER
NO
RT
HW
ES
TE
RN
UN
IVE
RS
ITY
FE
INB
ER
G S
CH
OO
L O
F M
ED
ICIN
E
320
East
Sup
erio
r Str
eet,
Sear
le 1
1-45
3C
hica
go, I
llino
is 60
611-
2923
Non
prof
it O
rgan
izatio
nU
.S. P
osta
ge
PAID
Evan
ston,
Illin
ois
COGNITIVE NEUROLOGY AND ALZHEIMER’S DISEASE CENTER
FRONTOTEMPORAL DEMENTIA AND PRIMARY PROGRESSIVE APHASIA
CAREGIVER EDUCATION and SUPPORT CONFERENCE
Cosponsored by the Association for Frontotemporal Dementias and the National Aphasia Association
Monday, March 21, 2011
The Robert H. Lurie Medical Research Center of Northwestern University
Hughes Auditorium 303 East Superior Street, Chicago
Local lodging 312-926-ROOM
Travel or respite financial assistance
Association for Frontotemporal
Dementias
267-514-7221 or
866-507-7222 (toll-free)
Questions?www.brain.northwestern.edu
/events/ftdppa.html
312-908-9023
Discounted parking Northwestern Memorial Hospital garage 222 East Huron Street
The Robert H. Lurie Medical Research Center of Northwestern University 303 East Superior Street