Huntington's Disease Support Information
Helpful Forms-Info
Index~HD Search
Convention Scholarship Fund
State HD Support
District of Columbia
New Hampshire
New Mexico
New York
North Carolina
North Dakota
West Virginia
Washington State
Pennsylvania~Delaware Valley
Rhode Island
South Dakota
Wyoming Non-HD Specific Caregiver Support
Miscellaneous State Resources
Other Resources

The following forms are all available on the HD Helpful Forms  website but am copying them here for ease of finding. You can also find Word Documents on various articles on HD under the HD Articles of Interest on the HD Caregiver's Website. 

CNA First Shift handout

HD Awareness Tri-fold Handout

I Have Huntington's Disease card

Caregivers Document Organizer
A form that will help you identify, locate, and organize the i
mportant documents your will need as a primary caregiver*
Caregivers Journal
Some tips for setting up a notebook to keep track of your
caregiving situation*
Use copies of this form to monitor daily changes and help with communication among care providers working in shifts*
Caregiving Decision Questionaire
A brief list of questions to help you set prioities and solve caregiving
Continuing Care Questionnaire
A list of questions to ask when you and your loved one visit
a continuing care retirement community*
(in PDF format) Cardiopulmonary
Resuscitation (CPR) includes a group of
procedures used when the heart stops beating.
Info on HD For Temporary Caregivers
In depth instructions to leave for temporary caregivers.
Prepared by Jean Miller~Word document is 4 pages providing needed data for EMS or other emergency personnel.  This form should be filled out for each member of your family and copies provided to your primary care physician, one in the glove compartment of each vehicle driven and one posted on the refrigerator  which is where EMS personnel look for information
Personal Health History-Prepared by Jean Miller-Word document is 5 pages.  This document provides the medical history on an individual.
Personal Records
A form to help you keep track of your loved ones personal records
and other important information*
Picture Cards-Prepared by Jean Miller
Samples of communication cards that can be copied or made up to help your loved one with relaying their needs.
Sample Filing System
Listed below is one possible method for setting up a home filing
system. You should adopt a system that fits your needs and those of your family*
Special Care Instruction booklet
Prepared by Jean Miller-The following pages are from a 12 page Word Document that can be modified to include personal information on a loved one requiring caregiving.  These provide background on that person to help temporary caregtakers understand your loved one's individual needs and limitations.  When I first made this form it was put together along with pictures of family members, pets, and a "picture-board" of words called "Kelly's Caregiving Handbook".
A handout to remind caretakers to respect the dignity of your loved one and not to treat them differently because of Huntington's Disease.


 Anxiety Questionnaire, Delirium Quick Recognition, Delusions Questionnaire, Depression Questionnaire, Disinhibited Behavior Questionnaire, Dyskinesia Self
Evaluation Form, Hallucinations
Questionnaire, Mood Swings Questionnaire, Sleep Questionnaire, Quality of Life survey.

Driving Assessment Checklist

HD Activities of Daily Living Rating Chart 4pgs This chart can be printed out and used to measure noticable changes to discuss with your physician.

Functionality Tests - Various assessment tests used for daily living, cognitive abilities, children, gait (walking), quality of life, etc.

Needs Assessment Worksheet (ADL)



Choosing the Right Doctor
Consider the following questions and steps as you and your
loved one evaluate physicians*
Choosing A Rehabilitation Program
A list of questions to consider as you and your loved one
prepare to choose a rehabilitation program*
Letter to Doctor-Medications-Prepared by Jean Miller-A sample letter for your primary care physician identifying all of the prescribed medication and OTC products you are taking requesting that they manage those to advise you of any problems or interactions.

Making a Personal Medical History Chart
A sample chart to help you document your loved one's
medical history

Medical Appointments-Record Changes To Discuss With Your Doctor Use this form to keep track of your medical appointments.

Personal Medical History form


Medication & OTC Form-Prepared by Jean Miller Word document is 2 pages.  This document is to provide  a list of all prescription medications and over the counter  (OTC) products used by an individual.  This should be  attached to the Personal Emergency Information form above.

New Drug Checklist-Q&A's

Weekly Medication Direction & Check Off Chart

Individual Medication Weekly Chart-Check Off

Keeping Track of Side Effects Form


Appointment Information
Use this form to keep track of your loved ones medical appointments*

Appointments & Follow Up List Prepared by Gerri H.-A form to help you keep track of appointments, things discussed and follow up actions which may be necessary.

Appointment Information-Q&A's

Therapy Calendar-Questions & Recommendations

Weekly Rehab Calendar
A form to help you and your loved one track his or her
rehabilitation goals and successes*


Assisted Living-Questions To Ask

Social Services Q&A Checklist

Assisted Living: Quality Of Life
A checklist of questions dealing with socializing, meals,
safety, and other issues to consider when you and your
loved one visit an assisted living facility*
Assisted Living: Special Care Units
If your loved one is considering a move to assisted living,
you need to find out about any special care services offered by the facility*
Assisted Living: Costs And Contracts
A list of financial questions to ask when you and your loved
one visit an assisted living facility*
Assisted Living: Personal Care
A checklist of personal and health care questions to ask
when you and your loved one visit an assisted living facility*
Assisted Living-Questions To Ask WORD DOC  A checklist of personal and health care questions to ask when
you and your loved one visit an assisted living facility.
Assisted Living: Special Care Units If your loved one is considering a move to assisted living,
you need to find out about any special care services offered by the facility.
Nursing Home Checklist
A list of basic questions to ask when you and your
loved one visit a nursing home*
Social Service Checklist
Use this form to keep a record of in-person and phone interviews with
social service agencies*
Questions About Hospice Care
A checklist of questions to ask as you try to find the right
hospice service for your loved one*


Information, forms and tips to help you with estate planning, including Personal Papers, Insurance, Living Trusts, Wills, Conservatorship/Guardian, etc.
Advance Care Directives Checklist in PDF Format Partnership In Caring's simply checklist you can print out to help you in completing your advance directives.
Guidelines for Quality Care-Evaluating Quality of Care Checklist (in PDF format) Although there are no "report cards" or accepted national standards yet available for judging quality end-of-life care, these are some questions you can ask to evaluate care. These can be used to help select providers and are also helpful if a loved one is dying and you are uncertain of the quality of care they are receiving. Use this checklist to talk to members of the health care team.

What Is Estate Planning Document

What Is A Conservatorship-Guardianship?

Valuable Records Form

Your Valuable Records
A form to help you keep track of all of your familys valuable records*
Home Modification Checklist
How to safety-proof a loved ones home*
Step by step descriptions and diagrams on how to modifiy a bathroom to be handicapped accessible
A collection of commonly asked questions received by the National Resource Center for Supportive Housing and Home Modifications. These questions are dividied into topic categories for your convenience. Information on several topics including Bathing, Floors, Grab Bars, Hearing Impairment, Lifts, Ramps, Stair Glides, Toileting, and Assistive Technology
 State and Local Funding - Many states and localities provide special grants and loans to their residents for home. This
site offers suggestions on how to find that funding.
Step by step descriptions and diagrams on how to modifiy a kitchen to be handicapped accessible.
Excellent links to home modifications and checklists from the National Resource Center on Supportive Housing and Home Modifications
 Step by step descriptions and diagrams on how to modifiy steps or add ramps to be handicapped accessible.
End of Life
Are You Grieving?
A checklist of the physical, mental, and behavioral symptoms of grief*
Information on sensitive decisions that need to be considered, things to help you, your family and loved one in the final stages of life.
Funeral Planning Checklist
A list of all of the issues to consider when planning a funeral*
Funeral Planning Form
As your loved one makes his or her funeral plans, use this form
to record all of his or her wishes for final arrangements*
Funeral Planning: Personal Information
A form to help you record important personal information for use in planning a funeral, informing friends and relatives, and writing an obituary*
Locate a Hospice in any city/state at this website. To learn more about hospice care or to find a hospice in the United States call 1-800-658-8898, or search the NHPCO hospice database. Select a state you are interested in or type a provider name and then click search. The search will display a list of cities and counties in the specified state that are served by hospices.
From Family Care America