Caregiver support & resources
Are you a caregiver?
Like many others, you may not think of yourself as a “caregiver.” Have you stepped in to help a family member or friend with everyday tasks like shopping, meals, cleaning, driving, paying bills, medications, dressing, or more? If so, we believe you are a caregiver. We appreciate the care you provide! We want to offer support and share resources available to you.
As a caregiver, you balance a lot. Research shows using services such as the ones listed below can reduce stress, anxiety, and depression for caregivers. These services can also enable you to provide care longer, delaying the need to place a loved one into long-term care residential options such as assisted living communities or nursing homes.
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- Avoid arguing and correcting your loved one. It usually only makes things worse.
- If your loved one is safe, it’s okay to join them in their view of reality.
- Avoid quizzing and asking, “don’t you remember?” It won’t help them remember.
- Breathe deeply and respond to their questions as if it’s the first time, every time.
- Use humor, compassion, touch, eye contact, and gentleness. How would you want to be treated?
- Accept help; it does not mean you are failing or a burden on others. Make a list of needs and share it if someone says, “let me know how I can help.”
- Take breaks to release tension, relax your mind, and renew your energy (respite).
Care consultations: Meetings with trained professionals to:
- Navigate caregiving decisions and family issues
- Assess current needs and anticipate future care challenges
- Identify caregiver resources
- Develop an effective care plan
- Assist with problem-solving
- Receive supportive listening in a confidential, nonjudgmental environment
Care consultations can be provided without a fee by any of the national dementia organizations through their helplines (see national websites and helplines list below). In addition, your local Area Agency on Aging can either provide a care consultation or help to direct you to a nearby organization for one. Finally, the Division of Aging & Adult Services provides in-person, virtual, or telephone care consultations through our partnership with the organizations listed below. You can self-refer for these free meetings; no need to get a referral from your healthcare provider.
- Cognitive Disorders Clinic, University of Utah
- Melissa Mauchley, LCSW, MSW
- 801-585-7575
- [email protected]
- Dementia Caregiver Clinic, Utah State University
- Laurie Smith
- 435-797-2088
- [email protected]
Education programs: As dementia progresses, additional knowledge and skills are needed to best support the person living with dementia. Dementia caregiving is complex; getting help to navigate the changes and challenges will benefit everyone involved. Education programs help you understand dementia, manage challenges, plan for the future, and learn about resources available to you. For more information about in-person or virtual classes in your area, contact your local Area Agency on Aging or see below for online, national education.
Free online education options:
- AARP dementia or caregiver courses
- Alzheimer’s Association courses
- Alzheimer's Foundation of America
- Caregiver Teleconnection
- Homecare & Hospice Association of Utah (HHAU)
- UCLA Dementia Care Caregiver Education
Support group meetings: Gatherings with people who share common experiences or concerns and provide each other with encouragement and advice. Being a caregiver can be a rewarding experience; it can also be a challenge. It helps to connect with people who understand what you are going through. Support groups provide opportunities to receive validation, support, and empathy, as well as learn tips from the experiences of others. To find support groups near you, check with your local Area Agency on Aging or the national dementia organizations (see national websites and helplines list below).
Respite: This is short-term relief for caregivers. Many caregivers find respite to be an affordable option to give themselves a break and help keep the person living with dementia at home for as long as possible. Caregiving can be stressful, overwhelming, and cause fatigue, anxiety, or depression. Reduce your risk of burnout by utilizing respite care, joining a support group, or speaking with a mental health professional. Respite can look many different ways:
In-home:
- A friend/family member visiting can allow you the opportunity to step away and take some time for yourself.
- Organizations such as personal care agencies can be hired to provide social visits, help with everyday jobs such as light housekeeping and meal prep, or help with care tasks such as bathing. These organizations can provide you with a few hours or up to 24/7 support.
Out-of-home:
- The person with dementia can spend a few hours to a few days a week (not overnight) at an adult day center (see adult day services below).
- They can stay overnight or multiple days/nights at an assisted living community or nursing home.
There are fees to use these services, and sometimes benefits such as long-term care insurance or Aid and Attendance through the Department of Veterans Affairs (VA) may help with the cost. The National Family Caregiver Support Program (implemented by Utah’s Area Agencies on Aging) and the VA’s Caregiver Support Program also offer respite care to eligible caregivers (see national websites and helplines list below for both programs).
Here are some organizations that also offer free respite (upon meeting qualifications):
- Area Agencies on Aging
- CurePSP
- Hilarity for Charity (HFC)
- Jewish Family Service
- Lynden Legacy Foundation
Adult day services: Services in which older adults, adults living with dementia, or adults living with disabilities receive individualized therapeutic, social, and/or health services for some part of the day. In Utah, most adult day services occur at adult day centers, which are freestanding buildings operated strictly for this purpose. Additionally, some assisted living communities or nursing homes offer adult day services at their community where people will visit for all or part of the day and are integrated into the day’s activities and routine along with the people who live there.
Benefits:
For people living with dementia, using adult day services can include benefits such as:
- Socialization
- Physical activity
- Cognitive stimulation
- Creative expression
- Building new friendships
- Safe environment
These benefits have shown to reduce falls, improve quality of sleep, and bolster self-esteem.
For caregivers, adult day services can:
- Help lower stress
- Offer you a break (respite)
- Reduce risk of burnout
- Allow you to continue working
- Provide peace of mind
There are fees to use these services. Medicaid, respite grants, and benefits such as long-term care insurance or Aid and Attendance through the Department of Veterans Affairs (VA) may help with the cost.
Adult day centers in Utah:
- Salt Lake County
- Neighborhood House
- Willow Canyon Living
- Tooele County
- Utah County
- Washington County
- Weber County
Taking care of yourself helps you be a better caregiver.
- Treat yourself like a friend.
- Feel the warmth of the sun.
- Listen to music, sing, or hum.
- Walk barefoot in the grass.
- Take time for your own passions.
- Write in a journal.
- Find reasons to smile.
- Put your own health first.
- Tell yourself, “I am doing a good job.”
- Call a friend, family member, clergy, etc.
- Join a support group.
- Use respite (see "Types of services" above to learn more).
Dementia websites and helplines
- Alzheimer’s Association
- alz.org
- Helpline: 800-272-3900
- Alzheimer's Foundation of America
- alzfdn.org
- Helpline: 866-232-8484
- Association for Frontotemporal Degeneration
- theaftd.org
- Helpline: 866-507-7222
- Creutzfeldt-Jakob Disease Foundation
- cjdfoundation.org
- Helpline: 800-659-1991
- CurePSP
- psp.org
- Hope Line: 800-457-4777
- Hilarity for Charity (HFC)
- Huntington’s Disease Society of America
- hdsa.org
- Helpline: 800-345-4372
- Lewy Body Dementia Association
- lbda.org
- Lewy Line: 800-539-9767
- Parkinson’s Foundation
- parkinson.org
- Helpline: 800-473-4636
Caregiver support organizations
- 211
- 211Utah.org
- Phone: 211
- AARP
- aarp.org/caregiving
- Resource line: 877-333-5885
- ARCH National Respite Network
- archrespite.org
- Phone: 706-256-2084
- Area Agencies on Aging
- daas.utah.gov/locations
- Ask about the National Family Caregiver Support Program (NFCSP)
- Caregiver Action Network
- caregiveraction.org
- Caregiver help desk: 855-227-3640
- Dementia Action Alliance
- Department of Veterans Affairs
- Aid and Attendance
- Home and Community Based Services
- VA Caregiver Support Program
- caregiver.va.gov
- Support line: 855-260-3274
- Utah VA Caregiver Support Program, George E Wahlen VA Medical Center
- Andrew Wittwer, LCSW, MPA
- 801-582-1565 x2608
- [email protected]
- Andrew Wittwer, LCSW, MPA
- Veterans Directed Care Program
- Eldercare Locator
- eldercare.acl.gov
- Phone: 800-677-1116
- Family Caregiver Alliance
- caregiver.org
- Phone: 800-445-8106
- Lorenzo's House (younger-onset dementias)
- National Institute on Aging (National Institutes of Health)
- AARP Family Caregiving Publications (available in digital or free printed copies)
- Care for the Caregiver
- Family Caregiver State Resource Guides
- Family Caregiver Questions Guide
- Financial Workbook for Family Caregivers
- Family Caregiving Guide (available in multiple languages)
- HomeFit Guide (available in multiple languages)
- Veteran and Military Families Caregiver Guide (available in multiple languages)
- A Guide on Advanced Care Planning Resources
- The Caregiver's Handbook (National Institute on Aging)
- Caregiver Planning Guide
- National Institute on Aging worksheets
- Coordinating caregiving responsibilities
- Home safety checklist
- Questions to ask before hiring a care provider
- Questions to consider before moving an older adult into your home
- Managing medications and supplements
- Important documents and paperwork
- The person I am with has dementia pass along cards
- Salt Lake County Aging Services (available in multiple languages)
- Creating Joy
- Managing Care
- University of Utah LEAD Guide
There are only four kinds of
people in the world — those who have been
caregivers, those who are currently caregivers,
those who will be caregivers and those who
will need caregivers.