Frontotemporal Dementia Caregiver Support Center

Definitions | Signs and Symptons | Diagnosis/Evaluation | Genetics | Videos
Frontotemporal | FTDP-17 | Corticobasal Degen. (CBD) | Progressive Aphasia | Similar Diseases | Dementia like Diseases
Managing Behaviors |Management Issues | Safety Issues | Late Stages | Taking Care of Yourself | Stories | Children | Poems |
Insurance | Social Security Disability Ins | Living Will | Power of Attorney | Guardianship | Financial | Other Legal
Research Centers | Map of Research Centers | Add a Center | Brain Endowment | Research Articles
subglobal5 link | subglobal5 link | subglobal5 link | subglobal5 link | subglobal5 link | subglobal5 link | subglobal5 link
subglobal6 link | subglobal6 link | subglobal6 link | subglobal6 link | subglobal6 link | subglobal6 link | subglobal6 link
subglobal7 link | subglobal7 link | subglobal7 link | subglobal7 link | subglobal7 link | subglobal7 link | subglobal7 link
subglobal8 link | subglobal8 link | subglobal8 link | subglobal8 link | subglobal8 link | subglobal8 link | subglobal8 link

Caregiver Issues - Management Issues

The information on this page is for reference and educational purposes. There is no substitute for seeing a doctor.
Quick Links

I would like to quote from Lisa and Gary Radin in their book "What's If It's Not Alzheimer's." In chapter 15, Katherine P. Rankin says "During the course of their loved one's dementia, caregivers will experience a series of changes in the patient's manner and behavior over time. The first important step for the caregiver is to learn to notice each change, no matter how gradually it has appeared. This is not only necessary to give the patient's healthcare providers accurate information to aid in treatment decisions, but it is an important issue for maintaining a healthy caregiving relationship. For each change, caregivers must first ask, 'How is this behavior affecting quality of life for me, the patient, and others around us?' Second, they must ask, 'Is the best course of action to (1) adjust to this new behavior, (2) try to change it, or (3) both? Caregivers must recognize that not every challenging new behavior really needs to be changed, nor will it even be possible give the nature of the patient's disease.'

Dr. R. J. Caselli spoke at the 5th International on Frontotemporal Dementia talked about Medical Management of Frontotemporal Dementia. Dr. Caselli talked about 7 categories needing to be addressed as followed:

  • Disease progression
  • Intellectural impairment
  • behavioral issues (addressed by a variety or psychotropic medications that include atypical antipsychotics and selective serotonin reupdate inhibitors, among others)
    • psychosis
    • depression
    • anxiety
  • sleep disorders
    • insomnia
    • sleep apnea
    • periodic leg movements of sleep
    • REM Sleep Behavior Disorder
    • restless legs syndrome
  • commonly associated problems
    • Incontinence
    • motor neuron-disease-related comorbidies
    • parkinsonism
    • dysphagia
    • other requiring individualized approaches to the specific issues
  • abrupt decline (usually implies a comorbid illness and requires timely medical assessment and therapy target to the underlying cause)
    • urinary tract infection
    • Post-operative delirium can be anticipated in many cases althrough there is no widely accepted uniform approach to prevention and treatment
  • Lifestyle changes
    • safety issues including driving cessation
    • securing weapons
    • medical supervision as well as supervised residential care, power of attorney, and related issues

Dr. G. Hall spoke at the 5th International Conference on Frontotemporal Dementia paper said a pFTD does not benefit from the same care approaches as a person with Alzheimer's, leaving few good alternatives for families seeking help.

Remember what works for one pFTD does not necessarily will work for another pFTD. It can be on a trial-and-error basis to find what works and what doesn't.


Best FTD Resources

What If It's Not Alzheimer's
© 2003 by Lisa Radin and Gary Radin

Chapter 4
Pages 67-72
Good article about finding a doctor, preparing to visit the doctor, the doctor's examination and follow-up after visiting the doctor

Chapter 5
Pages 73-89
Article about Drug Therapy Options

Chapter 6
Pages 91-115
Rehabilitation Interventions
Talks about using different therapists like occupational, speech, and physical. There is a page on treatment of difficult or unruly behaviors and more.

Chapter 7
Page 117-122
Discussion about understanding the stages of the disease

Chapter 11
Pages 159-168
Exercise and Mobility

Chapter 12
Pages 169-180
Activities and Socialization

Chapter 13
Pages 181-191
Fostering Personal Care
Hygiene, Dressing, and Eating

Chapter 14
Pages 193-204
Creating a Safe and Supportive Environment

Chapter 15
Pages 205-218
Altered Relationships
This chapter describes some of the social and emotional changes

Chapter 16
Pages 219-228
A Balance of Health
This Chapter describes general medical care issues

Chapter 17
Pages 229-242
Final Choices
This chapter describes dealing with end-of-life issues

Chapter 18
Pages 245-252
This chapter describes using professional caregiving options

Chapter 19
Pages 253-270
This chapter discusses assisted living and nursing homes options

Chapter 20
Pages 271-281
This chapter discusses creating a helpful support network

Chapter 21
Pages 283-302
This chapter discusses financial and legal issues

Chapter 22
Pages 305-310
This chapter discusses respite and personal care for the caregiver

Chapter 23
Pages 311-322
This chapter discusses managing emotions and grief
I think this is a great article about emotional health

Association of Frontotemporal Dementia (Website)

Managing Behaviors
Google Video - Management and Treatments (26 minutes)
Google Video - Occupation and Physical Therapy (26 minutes)

Pick's Disease Support Group (Website)

Challenging Behaviors

University of California, San Francisco (Website)
Family Caregiver Alliance (Website)

Caring for Adults with Cognitive and Memory Impairments
Dementia, Caregiving and Controlling Frustration

When reading articles from Family Caregiver Alliance, always review the links under the Resource section at the bottom of each article - Lots of good information.

National Institutes of Health (Website)

No information was found on this website about this topic.


Other Internet Articles

The most important rule:
Treat the confused person as an adult -- always be respectful.

Northwestern University in Chicago has the following pages to read.

Housing Options
In-Home Care Options
Basic Suggestions to Improve Care
How Family Member Respond

The Victorian government in Australia has a website called Better Health Channel.

Dementia - early planning will help
Dementia - sexuality and intimacy
Dementia and personal hygiene
Many more web pages about Dementia

At Caregiver.Com they have an article about leaving your loved one home alone. A member from the Yahoo Support Group brought this website to our attention.

Jennifer J. Merrilees, RN, MS and Dr. Bruce L. Miller wrote this medical paper called "Long-Term Care of Patients with Frontotemporal Dementia."

The Annals of Long-Term Care provides this special article called "Comparing Alzheimer's Disease and Frontotemporal Lobar Degeneration: Implications for Long-Term Care" written by Jennifer Merrilees, RN, MS, and Dr. Bruce Miller.

For the full article click the link below.

E-mail for Yahoo Support Group

  1. Continue to read notices from this support group so you can learn more about your father's illness and how to deal with it.

  2. Send cards from time to time to your dad - not "get well" necessarily, but "Thinking of You" or encouragement cards.  Send pictures.  Let him know that you think of him often and hope he is having a good day.

  3. This is important:  Understand that your mother is going through this horrible disease with your dad.  It has impacted her life as much as his.  Often the primary caregiver does not get enough love and support.  People will call and ask your mom how your father is doing.  Wonderful people will call and ask your mom how SHE is doing.

  4. Plan to visit when you can.  Spend a weekend or extended weekend helping your mom with things around the house.  Sit with your dad while she goes shopping.  Prepare all the meals during your visit to give your mom a break.  She will welcome the "vacation."

    Your mom is going to need someone to talk to.  She cannot complain to your dad and needs a confidant.  You don't have to give advice, just listen and let her know you care and understand.  Good luck, sweetie (E-mail from Yahoo Support Group Member)

Traveling with a Dementia person

Having Surgery? What You Need to Know
The United States Department of Health and Human Services has an agency called Agency for Healthcare Research and Quality provides this website to give you general information about surgery. Nothing specific to FTD issues.

+11/06/06 (Don B.)

The Nursing Center website provides this article, "The Bathing of Older Adults with Dementia." Once you get to this site, click on the button, "PDF Version" to review the article.

+11/06/06 (Don B.)

Extract from Psychiatry in General Practice (1994)

+11/06/06 (Don B.)

Parent's Wish
... a parent's wish for their children during their old age

  Quote : I found it very touching and appropriate for this group of caregivers and loved ones.
Please visit this website:
for a very heart touching moment.

+11/18/06 (Karen)

Alzheimer's Disease International offers this page of useful tips


The National Guideline Clearinghouse offers this web page about bathing persons with dementia. Under the Recommendations are different sections that has some useful tips.



In doing some research this morning I came across a number of articles talking about the use of a Visual analogue scale for pain, which is used for young children, as well as for persons with various forms of dementia. The normal scale which most of us use.....indicating our pain on the scale of one to ten....will not be effective as the disease progresses.

I wasn't able to download the visual analogue scale which I found on the following website

but you might want to take a look at page 25 to see what I'm talking about. I imagine a person could purchase one of these visual analogue scales for their own use.....somewhere.

I did go to another website and got six suitable `happy' faces.....and some not so happy....jpegs and have added these to My Photo Book along with the wording from the sample on page 25 indicating the various stages of pain. Hopefully this will be useful sometime down the road.

(Mary has dementia)

+11/20/07 (Mary~Canada)



Holiday Articles

The Association for Frontotemporal Dementia offers this web page with holiday tips.


The Family Caregiver Alliance offers this web page called,
Caregiving and the holidays: from stress to success!

+11/19/06 (Victoria F.)

The University of Illinois College of Medicine offers holiday safety tips for your home.


The University of Washington's ADRC Center offers this article "Beating the Holiday Blues."


Duke University's Center for the Study of Aging and Human Development published a document called:

Visiting an Alzheimer's Family
How to Have a Great Conversation
When You Don't Know What to Say


The Picket News offers an article called, "Memory Matters: Holidays and Dementia."


Alzheimer's Foundation of America provides a list to help keep the cheer in the holidays.


University of Florida Health Science Center News offers a 2 minutes video on dealing with dementia over the holidays. There is a high speed version and low speed version. Or you can get the story on the web page.


The Alzheimer's Association offers this fact sheet about holidays.


The Alzheimer's Society in the United Kingdom provides this document called "Traveling and going on holiday."


The BJB Educational Services provided this web page called, "Minimizing Stress--During a Busy Holiday Season."


Yahoo Health offers this article, "Alzheimer's: Planning for the holidays."


The Alzheimer's Society of British Columbia offers this web page called, "Managing the Holidays - Introduction"


The Eastern North Carolina Chapter of the Alzheimer's Association provides this web page called, "P E A C E for the Holidays."


The New York City Chapter of the Alzheimer's Association provides this web page called, "Holidays. This page has a lot of good information and easy to read.


The Alzheimer's Services of Cape Code & the Islands provides "Keeping the Cheer in the Holidays". The site is a PDF file and the article is on page 1 and page 6.


Alzheimer's Association


About Us | Site Map | Disclaimer | Privacy Policy | Contact Us | ©2006 Brauer Solutions, LLC