Accelerating Adoption of Assistive Technology to Reduce Physical Strain among Family Caregivers of the Chronically Disabled Elderly Living at Home. Appendix B. Family Caregiver Guide to Assistive Technologies and Home Modifications

Caregivers give much needed support for older adults with disabilities or illness living at home. But often caregiving can be a physical strain. When you take care of yourself, you can better help your family member or friend. Many assistive technologies (AT) and home modifications (HM) may help make life easier for you and protect your safety and safety of your family member.

Did you know...?

• Lifting more than 35 pounds by yourself is not safe. Moving a person can greatly increase your risk of injuries like back strain. If a person cannot support any of their weight, lifting them alone is unsafe.¹⁰ A hoist or lift can help protect you and your loved one.

• Caring for a person with dementia can lead to physical strain. The person may get confused and resist help. They may need a lot of care. Making the home better suited for a person with dementia could help.

• Helping a person do things on their own when they can is best. When a person gets too much help, they may get more dependent. Many kinds of AT/HM can help a person do more on their own and stay safe. This can help them keep their strength and reduce the amount of help they need. That eases the strain on you. Also, using AT/HM to do things on their own may help your family member maintain their dignity and deter depression.

• Many AT/HM can be useful for people of all ages and health. But many of the changes that older people and caregivers need are things that can be useful for anyone. It could be as simple as a new light or a bath mat. Many people of all abilities use hand rails. Pill boxes can help anyone remember to take meds.

• Many AT/HM are low or no cost. Some of the most needed items are small and low cost. Many places offer low cost used equipment. Some lend this equipment for free. Some home modifications are free, like clearing clutter.

• Renters can use AT/HM. Many renters use AT /HM. Under Fair Housing law, you may make reasonable home mods in a rental home. Talking with your landlord first is a good idea.

Assessing your needs and choosing the right AT/HM helps make sure it will work for you. This guide lists many resources that can help. Some also offer other caregiver support. We list where to go for more help with choosing and obtaining AT/HM. The resources are free or low cost.

TOOLS FOR ASSESSING YOUR NEEDS

These are tools to help assess your home safety and needs. They give ideas on home safety, caregiver health and strain, and AT/HM.

AARP
Home Fit Guide

AARP's "Home Fit Guide" gives advice, tips, and checklists to help people make their home safer to live in as they age. Search for "Home Fit Guide" on the AARP homepage. It includes:

1. Do You Have a "Livable" Home? Checklist on whether your home is "livable" and will meet your needs now and in the future. An Occupational Therapist can help with this step.

2. What is Universal Design? Information on features that make a home easier to live in for someone of any age or ability.

3. Home Safety Checklists: Safety checklists for parts of the home--entries and exists, yard, steps and stairs, bathrooms, kitchens, living rooms, and bedrooms.

4. Home Maintenance by Season: Checklists for home maintenance by season to keep the home safe.

5. Home Energy Tips and Projects: Tips for cutting energy use and saving money.

Web: http://www.aarp.org
Mail: 601 E Street, NW, Washington, DC 20049
Toll-Free: 888-OUR-AARP (888-687-2277) / Toll-Free TTY: 877-434-7598

American Medical Association
Caregiver Self-Assessment Questionnaire

This tool helps you assess your risks. With your doctor's help, it helps you decide what's best for you and your family member. Search "Caregiver Self-Assessment".

Web: http://www.ama-assn.org/
Mail: 515 N. State Street, Chicago, IL 60654
Phone: 800-621-8335

South Dakota Caregiver Program
Caregiver Self-Assessment

This tool helps caregivers assess where they need help. It includes help with AT and learning how to safely lift and transfer. Search "Caregiver Self-Assessment".

Web: http://dss.sd.gov/
Phone: 605-773-3656 or 1-866-854-5465

IDEAS Consulting
Environment and Communication Assessment Toolkit

This Toolkit suggests home mods for communicating with a person with dementia. It focuses on people in long-term care settings, but can also help caregivers at home. A webinar is also provided (http://www.alzpossible.org/wordpress-3.1.4/wordpress/webinars-2/833-2/).

Web: http://www.ideasconsultinginc.com/#
Mail: 8055 Chardon Road, Kirtland, Ohio 44094
Phone: 440-256-1880

Centers for Disease Control and Prevention (CDC)
What You Can Do to Prevent Falls

This toolkit tells how to make your home safer and help prevent falls (http://www.cdc.gov/ncipc/pub-res/toolkit/WhatYouCanDoToPreventFalls.htm).

Web: http://www.cdc.gov/homeandrecreational safety/falls/index.html (more about Older Adult Fall Prevention)
Phone: 800-CDC-INFO (800-232-4636) TTY: (888) 232-6348

Fall Prevention Center of Excellence

This center provides many tools with ideas to prevent falls.

Web: http://www.stopfalls.org/
Mail: University of Southern California Andrus Gerontology Center, 3715 McClintock Ave., Room 228, Los Angeles, CA 90089-0191
Phone: 213-740-1364

Promoting Safety and Function Through Home Assessments

This article provides an overview of home safety assessments and three different assessments in the appendix.

Web: http://plaza.ufl.edu/mlwsail/6_promoting%20safety.pdf.

INFORMATION ON CHOOSING AT/HM

These resources can help with choosing the right AT/HM. Some will also connect you to makers and sellers of AT/HM.

AbleData

This site is funded by the federal government as a source of info on AT. It contains many fact sheets and guides on choosing AT by type of impairment. Select "Library", then "AbleData'sPublications".

Web: http://www.abledata.com/
Mail: 8630 Fenton Street, Suite 930, Silver Spring, MD 20910
Phone: 800-227-0216 or 301-608-8998 / TT: 301-608-8912

HomeMods.org

HomeMods.org offers guides to independent living at home for older adults and people with disabilities. Some relate to HM and housing repair. Go to the "Resources" Page and click "Library".

Web: http://www.homemods.org
Mail: Andrus Gerontology Center, University of Southern CA, 3715 McClintock Avenue, Los Angeles, CA 90089-0191
Phone: 213-740-1364

Center for Assistive Technology and Environmental Access (CATEA)
National Public Website on Assistive Technology

Here, you and your family member can learn about AT and other help for people with disabilities.

Web: http://assistivetech.net/
Mail: 490 Tenth Street, Atlanta, GA 30332-0156
Phone: 404-894-4960 (V/TTY)

This Caring Home

This project of Weill Cornell Medical College tells ways caregivers can make the home safer for people with dementia. It can be useful for all family caregivers. Caregivers can learn many things from this site. They can learn how to assess home safety and find out about products to help with giving care. These products could help ease stress for you and your family.

Web: http://www.thiscaringhome.org

Technology for Long-Term Care

This site provides pictures and descriptions of over 1,200 products for long-term care. This includes devices for bathing, memory, dressing, eating, falling, wound care, and much more. The site also includes articles and questions to ask sellers about the devices.

Web: http://www.techforltc.org/
Mail: 8055 Chardon Road, Kirtland, Ohio 44094

North Dakota Family Caregiver Project, ND State University
Assistive Technology and Older Adults: The Journey Through Caregiving

This is a useful guide for family caregivers of older adults at home. It answers many questions about AT, home safety, and HM.

Web: http://www.ndsu.edu/ndsu/aging/caregiver/pdf/assistive/manual.pdf
Mail: EML Room 277F, Fargo, ND 58105
Phone: 701-231-7391

National Association of Home Builders
Directory of Certified Aging in Place Specialists

This directory lists remodelers¹¹ who are trained in the needs of older adults. They are also trained in HMs for aging in place, remodeling projects, and solving common problems. Search for "Find a Certified Aging in Place Specialist".

Web: http://www.nahb.org
Mail: 1201 15th Street NW, Washington, D.C. 20005
Phone: 1-800-368-5242

GENERAL CAREGIVER SUPPORT

These resources and websites can help you find caregiver support. Some also tell about home safety, AT, and HM.

AARP Caregiver Site

This website provides caregiver support and info on many topics.

Web: http://www.aarp.org/relationships/caregiving/
Mail: 601 E Street, NW, Washington, DC 20049
Toll-Free Nationwide: 888-OUR-AARP (888-687-2277) / Toll-Free TTY: 877-434-7598

Family Caregiver Alliance (FCA)

FCA offers many useful resources for family caregivers. A fact sheet tells about types of AT that may help you and your family member. It also tells how to find AT, how to pay for it, and how to decide what you might need. Go to "Fact Sheets", "Caregiving Issues and Strategies", "Assistive Technology". It is free online, or $2 a copy. (To order, go to "Fact Sheets", "Order Publications".)

Web: http://www.caregiver.org
Mail: 180 Montgomery St, Ste 900, San Francisco, CA 94104
Phone: (415) 434.3388; (800) 445.8106

National Alliance for Caregiving (NAC)

NAC offers many materials for family caregivers, such as booklets, tip sheets, webcasts, and meeting materials. These are in the "Resources" section of their website. You can also find your state caregiving coalition ("Coalitions", "Coalitions by State"). These coalitions help caregivers meet their social, health, financial, and emotional needs.

Web: http://www.caregiving.org/
Mail: 4720 Montgomery Lane, 2nd Floor, Bethesda, MD 20814
Phone: 301-718-8444

National Family Caregivers Association (NFCA)

NFCA's website offers many caregiving resources ("Caregiving Resources"). They also provide ways for caregivers to connect with each other ("Connecting Caregivers"). NCFA also offers free support through its Family Caregiver Community.

Web: http://thefamilycaregiver.org/
Mail: 10400 Connecticut Avenue, Suite 500, Kensington, MD 20895-3944
Toll Free: 1-800-896-3650, Phone: 301-942-6430

Rosalynn Carter Institute for Caregiving (RCI)

RCI works to improve supports for caregivers. This site offers links to many caregiver resources, including reports and tools on helping caregivers in the home. It includes a home safety assessment checklist, connections to sites for HM, and other resources helpful to family caregivers. Go to "Caregiver Resources."

Web: http://rci.gsw.edu/
Mail: 800 GSW Drive, Georgia Southwestern State University, Americus, GA 31709-4379
Phone: (229) 928-1234

Alzheimer's Association

The Alzheimer's Association offers a 24-hour helpline, local offices, and info for caregivers.

Web: http://www.alz.org/
Mail: Address: 225 N. Michigan Ave., Fl. 17, Chicago, IL 60601
24-hour helpline: 1.800.272.3900

Department of Veterans Affairs (VA) Caregiver Support

The VA offers many services to help caregivers of veterans. This website tells about these services. The "Caregiver Tool Box" can help you find tools that work for you. The VA's Caregiver Support Line gives info on the help offered and helps with getting services. They can also connect you with your local Caregiver Support Coordinator, or just listen.

Web: http://www.caregiver.va.gov/
VA Caregiver Support Line: 1-855-260-3274

WHERE TO GO FOR MORE HELP WITH AT/HM

The people and programs below may be able to give you more help with AT/HM. Contact them if you have questions or concerns about your home's safety. Some may be able to help you choose, access, and pay for AT/HM.

Your local aging services provider

This could be a National Family Caregiver Support Program, Area Agency on Aging, Aging and Disability Resource Center, or other program in your area.

These programs can help you get the services you need to care for yourself and your loved one. They can also refer you to other programs that might be able to help.

These can be found in the Eldercare Locator: http://www.eldercare.gov/eldercare.net/public/resources/topic/Caregiver.aspx

Phone: 1-800-677-1116

For more information about the National Family Caregiver Support Program, see http://www.aoa.gov/AoARoot/AoA_Programs/HCLTC/Caregiver/index.aspx.

Your primary care doctor

When you meet with your or your family member's doctor, tell them that you are a family caregiver. Tell them about any problems that your family member is having with daily activities, falling, or driving. Consider asking for a referral to an occupational therapist or someone else who can help you assess your needs and find out about AT/HM that might help. You could also ask where you can go for other support with caregiving. With a doctor's order, Medicare may pay for some or all of the cost of certain medical devices (http://www.medicare.gov)

Phone: 1-800-MEDICARE

An occupational therapist (OT)

OTs can help people do things they want or need to do.

They may visit your home and suggest changes to help you or your loved ones create a safer environment.

To learn more about how an OT might help you, visit the American OT Association.

Web: http://www.aota.org/About.aspx
Mail: 4720 Montgomery Lane, PO Box 31220, Bethesda, MD 20824-1220
Phone: 301-652-2682 / TDD: -800-377-8555

Your local Center for Independent Living (CIL)

CILs can help you by helping the person with a disability get the supports they need. This may include access to AT/HM.

These can be found in the ILRU Directory: http://www.ilru.org/html/publications/directory/index.html

Phone: 713-520-0232 ext. 130 (Voice/TTY)

Your nearest State AT project

These projects help people with disabilities to live independently through the use of AT. They serve people of all ages.

A state listing is offered at the State AT Projects Information Center, http://www.abledata.com/abledata.cfm?pageid=113573&top=16050&ksectionid=19326&stateorganizations=1

You can contact AbleData for more information at 800-227-0216 or 301-608-8998.

Pass It On Center

This center helps people with disabilities get affordable used AT.

Web: http://www.passitoncenter.org/
Phone: Toll Free 1-800-497-8665 or TDD: 1-866-373-7778

Non-Profit Resources

Below is a listing of just a few additional national nonprofit resources that provide assistance to family caregivers with AT/HM.

Easter Seals is a nonprofit, community-based health agency that assists children and adults with disabilities attain greater independence. Their resources include information on accessible homes, transportation, and workplaces. You can go to their webpage to locate an Easter Seals near you.

Web: http://www.easterseals.com
Mail: 233 South WackerDrive, Suite 2400, Chicago, IL 60606
Phone: 800-221-6827

Rebuilding Together is a national nonprofit that works to preserve affordable homeownership and revitalize communities. Some of their work includes a national Safe at Home initiative, helping to address home repair and maintenance issues.

Web: http://www.rebuildingtogether.org/
Mail: 1899 L Street NW, Suite 1000 Washington D.C. 20036
Phone: 800-473-4229.

The National MS Society has state chapters that can help people with MS and their families receive resources and services they need, including accessing assistive technology.

Web: http://www.nationalmssociety.org/index.aspx
Mail: 733 Third Ave, 3rd Floor New York, NY 10017
Phone: 800-344-4867

The Muscular Dystrophy Association is a nonprofit health agency dedicated to curing muscular dystrophy. They have over 200 offices around the country, some of which have partnered with family caregiver programs to help bring assistive technology to the homes of individuals living with muscular dystrophy.

Web: http://www.mda.org/
Mail: 3300 E. Sunrise Drive Tucson, AZ 85718
Phone: 800-572-1717

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