Frontotemporal Dementia & Primary Progressive Aphasia Resources
Local Resources
- Northwestern University Feinberg School of Medicine
Cognitive Neurology & Alzheimer’s Disease Center
http://www.brain.northwestern.edu
- Clinical Services
Northwestern Memorial Faculty Foundation
Neurobehavior & Memory Health Clinic
675 N. St. Clair, #20-100
Chicago, IL 60611
To make an appointment call: 312-695-9627
- Education
Frontotemporal Dementia & Primary Progressive Aphasia
Caregiver Education & Support Conference & Monthly Support Group
Call 312-503-0604 for more information
- Support Group
Frontotemporal Dementia & Primary Progressive Aphasia Monthly Support Group
Call 312-503-0604 for more information
- Illinois Department on Aging
http://www.state.il.us/aging/default.htm
Contains helpful information for individuals over 60.
National & International Resources
Support Groups
Financial/Legal Information
- Disability Information
If the patient is working and needs to file for disability, it is best to speak to their employer as well as the local social security office. Disability benefits are usually obtained as long as your impairment does not medically improve and you cannot work.
Social Security: 800-772-1213, http://www.ssa.gov
More information: Alzheimer’s Association: 800-272-3900, http://www.alz.org
- Legal Matters
An "elder law" attorney can assist you with legal and financial planning.
The National Academy of ElderLaw Attorneys: 520-881-4005, http://www.naela.org
- Medicare
Medicare is a health insurance program for people over the age of 65 or under 65 with certain disability. Part A covers inpatient care without monthly premiums. Part B covers outpatient care with a monthly premium.
http://www.medicare.gov
800-MEDICARE
Home Care Services
Language Specific Resources
Books
- What if It’s Not Alzheimer’s?
A Caregiver’s Guide to Dementia
Lisa Radin and Gary Radin, editors. Prometheus Books, 2003.
The first caregiver manual devoted exclusively to FTD. A ‘must read.’
- Losing Lou-Ann
Erb, Clinton A. Brandon, VT: Holistic Education Press, 1996.
An inspiring account of a spouse caring for his wife with Pick’s disease.
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- Pick’s Disease and Pick Complex
Kertesz, Andrew and Munoz, David G. Chichester, U.K.: Wiley-Liss, 1998
The first book devoted to Pick’s disease and its clinical and pathological manifestations. A comprehensive reference that clarifies Pick’s diagnosis compared to other forms of dementia.
- The Banana Lady and Other Stories of Curious Behavior and Speech
Kertesz, Andrew. Trafford Publishing: 2006.
Nineteen lives are chronicled as told by caregivers, followed by excellent tips for caregiving, a useful glossary of terms, plus FTD references.
To order: www.trafford.com/06-1883
- An Evolution of Love: Life and Love with Frontotemporal Dementia
Marie Sykes & Michelle Stafford. Georgetown Publishing, LLC: 2007.
A memoir describing the life of Bob Sykes, Jr., a man who passed away from FTD at age 50. The book describes Bob before and after FTD and details how the family cared and coped with Bob’s illness.
- The Pick’s Disease Support Group (PDSG) has published a booklet containing the personal experiences of caregivers coping with a number of conditions. For details on how to order print copies, e-mail info@pdsg.org.uk
- When a Family Member Has Dementia: Steps to Becoming a Resilient Caregiver
McCurry, Susan M. Praeger Publishers: 2006.
- The Executive Brain: Frontal Lobes and the Civilized Mind
Goldberg, Elkhonon. Oxford University Press: 2001.
- The Dysphagia Cookbook: Great Tasting and Nutritious Recipes for People with Swallowing Difficulties.
Achilles, Elayne. Cumberland House Publishing: 2004.
A recipe book for individuals with dysphagia, a condition of swallowing difficulty that sometimes occurs in dementia.
Other
For Professionals
- Banks, S. Rogalski, E. Medina, J. Skoglund, A. Morhardt, D. Organizing a
series of education and support conferences for caregivers of individuals
with frontotemporal dementia and primary progressive aphasia. Alzheimer
Care Quarterly, 7(4), 2006.
- Weintraub, S., Morhardt, D. Treatment, Education and Resources for Non
Alzheimer Dementia: One Size Does Not Fit All. Alzheimer Care Quarterly
6(3), 201-215, July/September 2005.
- Younger People with Dementia: Planning, Practice & Development
Sylvia Cox & John Keady (Eds.) Jessica Kingsley Publishers: 1999.
A book for professionals that describes the different type of care needed for younger individuals with dementia.
- The Human Frontal Lobes: Functions and Disorders
Bruce Miller & Jeffery L. Cummings. The Guilford Press: 1998.
An informative book discussing the functioning of the frontal lobes.
- The Frontal Lobes
Jarl Risberg & Jordan Grafman. Cambridge University Press: 2006.
- American Speech-Language-Hearing Association
Dementia: Benefits of Speech-Language Pathology Services
http://www.asha.org/public/speech/disorders/DementiaSLPservices.htm
An excellent site with links that details speech-language therapy guidelines for dementia.
- Practice Guidelines of the ANCDS
http://ancds.org/practice.shtml
A site from the Academny of Neurological Communication Disorders & Sciences that provides guidelines for the management of communication disorders in neurologically impaired individuals.