Dementia Care: Individuals and Families

When someone notices memory changes in themselves or a loved one, it can be difficult to know what to do next. This section contains information on getting a diagnosis, providing care at home, supporting the family caregiver, and moving to a care facility.

Physical activity can reduce your risk of dementia.

How much do you need to exercise to reduce your risk of getting dementia? It may be less than you think. In this video, Wisconsin's First Lady Kathy Evers interviews Dr. Ozioma Okonkwo, a researcher from the Wisconsin Alzheimer's Disease Research Center, about the relationship between exercise and brain health.

 

Concerns about memory

Elderly couple playing a crossword puzzleSimple lapses in memory are normal at any age, but memory loss that consistently interferes with daily life can be a sign of cognitive change. However, memory loss is not necessarily a sign of dementia. Confusion and memory loss can be symptoms of a variety of conditions, and some are easily remedied. Participating in a memory screen and talking with a physician are important steps in determining the cause of changes in memory and thinking.

Memory screens

Aging and disability resource centers can provide memory screens at no cost to the general public. The screen takes between five and 10 minutes and is equivalent to a blood pressure reading. An elevated blood pressure reading does not necessarily mean someone has heart disease. In the same way, the memory screens are not a diagnosis, but a tool to detect changes that should be discussed with a physician. The results of the memory screen can tell you whether you should talk to your doctor about your memory or other concerns with thinking and concentration. There are many causes of memory trouble and increased confusion that can be reversed. Memory screens can be done at the ADRC, in your home, or at another location. The results are confidential.

Talking to your doctor

Talking to your doctor about memory concerns for yourself or a loved one can be a stressful experience. The following section includes resources on how to prepare and what to expect when you talk with your physician.

Wisconsin Alzheimer's Institute clinics

If you would like a second opinion about your memory concerns, you can contact a Wisconsin Alzheimer's Institute (WAI) memory clinic to make an appointment. WAI offers a network of 44 affiliated memory clinics, including two clinics in Milwaukee serving the African-American and Hispanic communities. These clinics provide care to more than 3,000 new patients annually, many from rural, underserved parts of Wisconsin.

Care at home

Elder couple sorting medications into daily organizer

Providing care at home for someone with dementia has rewards as well as challenges. It is not a journey that caregivers and people with dementia have to navigate on their own. This section provides information on available programs, supports, and other resources.

  • Aging and disability resource centers (ADRCs): ADRCs can help you find local services, make care plans, and connect you with your local dementia care specialist.
  • 24/7 Alzheimer's Association Helpline: Call 800-272-3990 to speak confidentially with a clinician about your situation. The helpline can discuss treatment options, local programs, and financial decisions with you. Help is available in over 200 languages.
  • Online training for family caregivers: This online training video is designed for people who support a family member with Alzheimer's or dementia. This training is available in English and Spanish.
  • Wisconsin Dementia Care Learning Center: This series of online training videos from the University of Wisconsin-Oshkosh is designed for community members, businesses, first responders, professionals, families, an others who interact with people with dementia.
  • Alzheimer's Family Caregiver Support Program: This program provides respite, education, and other support to caregivers of people diagnosed with Alzheimer's disease or dementia. to qualify, the income of the person with dementia and their spouse cannot exceed $48,000 (after deducting dementia-related expenses).
  • National Family Caregiver Support Program: This program provides respite, education, and other support to caregivers of older adults (those over age 60). There is no income limit or eligibility to receive services, but low-income people and those with dementia are given priority.

Care for the caregiver

Providing care to family and friends is an expected part of life. But when short-term caregiving turns into long-term caregiving that lasts years, it is normal to feel stressed. The following sections can help make caregiving more manageable.

Community support

Aging and disability resource centers (ADRCs) can help you find local services, make care plans, and connect you with your local dementia care specialist.

Support groups

Contact your local ADRC, the Alzheimer's Association, or the Alzheimer's and Dementia Alliance of Wisconsin to find caregiver support groups in your area. Talking with people with similar experiences can help relieve stress. These groups also provide an opportunity to build new friendships and share ideas.

Adult day care centers

Adult day care centers are places where people living with dementia can spend supervised time during the day, and generally operate during normal business hours. Services may include personal care, supervision, behavior management, and social activities. Find providers near you.

Memory cafes

Memory cafes are regularly scheduled social gatherings (in places such as coffee shops and libraries) for those with memory loss or dementia and their caregivers. It is important for people living with dementia and their caregivers to socialize without fear of embarrassment from the stigma around the symptoms of dementia. Memory cafes provide a wide variety of social opportunities to meet new people or to visit with friends in a place where all can feel comfortable.

Balancing work life

Caregiving can conflict with job responsibilities. Caregivers who work with their employer to develop a plan to balance home and work life demands will be less stressed and more satisfied with the quality of care they provide. The AARP Guide to Caregiving While Working describes employee benefits and legal options. DHS has also created a webpage of resources that you can share with your employer.

Self-care

Being a family caregiver does not mean that your life or your needs stop being important. Taking time for self-care allows caregivers to rejuvenate and to avoid becoming resentful or depressed. The links below provide self-care resources.

Intellectual and developmental disabilities and dementia

Memory screens specific for individuals with intellectual and developmental disabilities (I/DD) and dementia

Wisconsin has put together a Dementia Resource Guide Book for people with I/DD. The guide provides information on memory screens, caregiving, and available services.

The National Task Group–Early Detection Screen for Dementia was created because the typical screening and evaluation tools may not be feasible for people with I/DD. This memory screen was designed to help in the early identification process and to begin the conversation with health care providers.

In the United States, 6% of adults with I/DD will be affected by some form of dementia after age 60. For adults with down syndrome, an estimated 50–70% will be affected by age 60, but with early identification, there is potential to proactively address signs and delay symptoms.

Planning ahead: advance directives

Man using tablet deviceAn advance directive describes, in writing, your decisions for yourself regarding health care or finances in a variety of areas. The Power of Attorney for Health Care document allows you to document your desire for treatments you want or do not want and how other health care decisions should be made for you if you become unable to speak for yourself. The Power of Attorney for Finances and Property document allows you to name an individual and what decisions they are allowed to make should you not be able to do so yourself.

Advance directive forms (including a living will and power of attorney for health care) are available on the DHS website. Advance directives are legal documents, but you do not need an attorney to complete them. If you have any questions about the forms, questions on the forms, or what they mean, the Wisconsin Guardianship Support Center is a free service that can answer questions. The DHS guide, Your Right to Direct Your Future Health Needs, P-62025 (PDF) also provides additional information.

Moving to a care facility

The decision to move

Doctors treating patient at hospital

There are many factors that should be considered when deciding to move to a long-term care setting.

How to find a care facility

Choosing the right care facility can be challenging. There are a variety of options, from attending an adult day care center that will provide care only during the day to residing in a skilled nursing facility with available 24-hour medical staff. The type of facility to choose is based upon many considerations, including the level of care needed by the person with dementia.

Residential care options
Person-centered care

Person-centered care is an important concept in providing quality care for people with dementia. Ask the care facility if they practice person-centered care and how they include the concept in their day-to-day routine.

Hospice care

Alzheimer's disease and other dementias are conditions that follow a path of progressive decline in a person's health and abilities, and will eventually lead to death. In the later stages of Alzheimer's disease the palliative care concepts included in hospice care can bring comfort and relief for people nearing the end of life. Hospice care programs vary in the services offered, but all can provide comfort care for a person with dementia near the end of life, either in the person's home or at a hospice care facility.

For more information about hospice care, visit:

Last Revised: July 14, 2022

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