Individuals and Families

Dementia logo

When someone notices confusion or changes in memory in themselves or someone they love, it can be difficult to know what to do next. Understanding what plans to make for yourself or a family member who has dementia is important early in the progression of dementia. Knowing what types of support and assistance are available throughout the progression of the disease can enable you and your loved ones to successfully navigate the challenges posed by the journey with dementia.

An elderly and young woman joining fingers to form a photo square

This section contains information on getting a diagnosis, care at home, care for the family caregiver, moving to a care facility, and additional considerations. Each section contains resources and connections to professionals that can provide guidance. Every individual and family is unique in how they will experience the journey with dementia. Being informed about your options and what is available is necessary in making decisions and plans for the future.

 

Concerns About Memory

Elderly couple playing a crossword puzzle

Simple 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

The majority of care for people with dementia occurs at home rather than in a care facility or institution. Making it possible for a person with dementia to stay at home in familiar surroundings is often the goal of both the individual with dementia and his or her family caregivers. 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. Additional support can be found through “Dementia-Friendly Communities” activities.

Aging and Disability Resource Centers (ADRCs) and Dementia Care Specialists (DCSs) are vital resources for helping caregivers provide care at home. ADRCs and DCSs provide accurate, unbiased information on all aspects of life related to aging or living with a disability, including dementia. ADRCs can help in finding local services to match the needs of individuals with dementia and their family caregivers.

All ADRCs can answer questions about dementia. Some ADRCs also have a Dementia Care Specialist (DCS). Staff can provide the following services: perform memory screens (see the "Concerns About Memory" tab) to determine the need for follow up with a primary care physician and connect family caregivers with needed assistance and support. DCSs and other ADRC staff can also discuss options for care and long-term care, and assist in making future care plans, and provide opportunities for individuals and family caregivers to participate in evidence-based interventions.

Share the Care

Share the Care logo

Share The Care™ Wisconsin is a caregiving model that shows family, friends, and neighbors how to become a powerful “caring community” to help someone with Alzheimer’s or other dementia stay in their home independently as long as possible, improve quality of life, and reduce isolation.

Share The Care empowers everyday people with a solid step-by-step plan on how to organize and maintain a “caregiving family” using an already-existing circle of family, friends, co-workers, neighbors, and other community connections, such as churches or clubs. If someone has no close family or friends, the community becomes their "family" and, by working together, makes it possible for a person and/or care partner to continue to be independent and supported in their home. To learn more about Share The Care, contact the Share The Care Project Coordinator at 608-228-0713 (leave a message).

Music & Memory

WI Music and Memory

The memories and feelings associated with a person’s favorite music remain strong for people living with dementia. Music & Memory™ is a non-profit organization that brings personalized music into the lives of the elderly or infirm through digital music technology. In Wisconsin, the Music & Memory™ program began in nursing homes throughout the state. However, the Wisconsin Music & Memory Program is also being expanded to assisted living communities, other health care entities and people’s homes through a variety of grants and collaborations.
 
State and Federal Caregiver Support Programs

Even the most dedicated family and friends cannot provide all of a person’s care or accomplish the wide variety of tasks that come up on a daily basis. This is why Wisconsin and the federal Administration for Community Living have designed programs to support people who provide in-home care to friends and family.

  • Alzheimer’s Family Caregiver Support Program (AFCSP) - Provides respite, education, and other support to family members and friends caring for someone diagnosed with Alzheimer’s disease or other dementia. People enrolled in Family Care or other publicly funded long-term care programs are not allowed to enroll in AFCSP. 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 (NFCSP) - Provides respite, education, and other support to family members and friends providing care to an older adult age 60+ living in the community. There is no income limit or eligibility to receive services from the NFCSP, but low-income individuals and people with dementia are given priority.

Contact the local Aging and Disability Resource Center for more information on AFCSP and NFCSP.

Alzheimer's, Dementia, and Caregiving Resources

Family caregivers can find additional resources and information at the Resources for Dementia and Family Caregiving page.

Dementia Training Opportunities

Care for the Caregiver

Woman helping an older family member sitting in wheelchair

Providing care to family and friends is an expected part of life. Most of us are happy to provide temporary care when the people in our lives need help. But when short-term caregiving turns into unexpected long-term caregiving that lasts years, or even decades, it is normal to feel stretched beyond one’s ability to cope at times.

Family caregivers of people with dementia experience the highest rates of stress of any group of caregivers. Employed caregivers suffer the most strain, both physically and emotionally. The following sections were designed to help make providing long-term care at home more manageable.

Balancing Work Life

Caregiving responsibilities can conflict with job responsibilities. Family caregivers who plan in advance and take an active role in working with their employer will be less stressed at work and more satisfied with the quality of care they provide to those who depend on them.

DHS has created a web-based “Dementia-Friendly Employers Toolkit,” which provides resources for employers as well as working caregivers, and helps employers and working caregivers bridge gaps in understanding. Joint planning for long-term family caregiving by employers and employees makes adjusting to unexpected family caregiving easier for both parties. The following links provide key resources for working caregivers:

Community Support

Aging and Disability Resource Centers offer information and assistance to caregivers in addition to people receiving care at home. Every community offers educational programming, support groups, and access to temporary respite care when unexpected illness or hospitalization occurs and family caregivers need a helping hand. There are times when we cannot do everything that is needed ourselves. Contact your local Aging and Disability Resource Center to find out about community support options in your area.

Memory Cafes

Memory cafes are places where people naturally gather to enjoy social activities, such as coffee shops, restaurants, libraries, nature centers, community centers, places of worship, and others. Memory cafes are not support groups, but are social gatherings convened on a regular basis for people in the early stages of dementia or memory loss, along with their family and friends.

Memory cafes include engaging activities and information covering a wide variety of interests, with topics selected by cafe participants. Refreshments are typically available and a person knowledgeable about dementia and available resources is present to answer questions. Memory cafes provide a setting where family and friends can spend time together with someone living with dementia in a supportive and understanding environment.

Memory Cafe Directory

Making Time for Yourself

Making time for yourself is key to being a good caregiver. Too often self-care is overlooked, but self-neglect is the leading reason why stressed-out caregivers fall ill themselves. Being a caregiver does not mean that your life or your needs stop being important. Maintaining ties to the people and activities that give life meaning enables caregivers to rejuvenate and come back to caring for others without becoming resentful or depressed. Attending support groups and talking to people living with similar demands provides important emotional support.

Support Groups

Talking with people experiencing similar challenges can help relieve stress. It provides an opportunity to build new friendships and share ideas. The benefits of attending local support group meetings include a temporary break from caregiving responsibilities, an opportunity to learn something new, and a chance to share or ask questions about your own situation. Once people attend their first support group, feelings of isolation and being the only one who understands are relieved. Contact your local ADRC or the Alzheimer’s Association to find out more about caregiver support groups in your area.

The Benefits of Joining an Alzheimer’s Support Group

Adult Day Care

Adult day care is a day program that provides the elderly and other adults with services when their caregivers are at work or need relief. Adult day care is a type of assisted living. An adult day care center provides services for part of a day, in a group setting to adults who need assistance with activities of daily living (ADLs), supervision, and/or protection.

Services may include personal care and supervision, provision of meals, medical care, medication administration, transportation, and activities designed to meet physical, social, and leisure time needs. Adult day care may be provided in family homes, free-standing centers, and multi-use facilities, such as churches, schools and senior centers.

Adult day care centers generally operate programs during normal business hours five days a week. Some programs offer services in the evenings and on weekends.

Statewide Adult Day Care Resources:

State and Federal Caregiver Support Programs

Family caregivers form the backbone of the American long-term care system. Family and friends who provide care save health care insurers and Medicaid-funded long-term care programs billions of dollars each year.

Even the most dedicated family and friends cannot provide all of a person’s care or accomplish the wide variety of tasks that come up on a daily basis. This is why Wisconsin and the federal Administration on Aging have designed programs specific to supporting those providing unpaid in-home care to friends and family.

  • Alzheimer’s Family Caregiver Support Program (AFCSP) - Provides respite, education, and other support to family members and friends caring for someone diagnosed with Alzheimer’s disease or other dementia. People enrolled on Family Care or other publicly funded long-term care program are not allowed to enroll in AFCSP. 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 (NFCSP) - Provides respite, education, and other support to family members and friends providing care to an older adult age 60+ living in the community. There is no income limit or eligibility to receive services from the NFCSP, but low-income individuals and people with dementia are given priority.

Contact your local ADRC for more information regarding the AFCSP and NFCSP.

Planning Ahead

Man using tablet device

In preparing for the future with dementia, there are many considerations and decisions that need to be made in advance of when they may actually be needed. Because dementia is a progressive degenerative condition, plans for future needs should be made as soon as possible so the person with dementia can participate in the decision-making process. Plans to ensure people with dementia are safe include issues beyond medical care, such as protections against financial scams and other forms of abuse. The sections below provide information on a variety of topics facing people with dementia and their caregivers.
Advance Planning

Making decisions about future financial and medical care needs is often called "Advance Planning." There are many forms and guides that can be useful in helping to make these difficult but important decisions. Advance directives can be legal documents, so it is important to talk with someone who is knowledgeable about the forms when completing them. The Wisconsin Guardianship Support Center is a free service that can answer questions about advance directives.

Preventing Elder Abuse

People with dementia are at increased risk for being targeted by scams and other forms of financial exploitation, as well as physical abuse and neglect. If you suspect yourself or someone else has been the victim of a scam, please notify your local law enforcement or adult protective services agency in your county.

Adult protective services agencies provide information on how to protect yourself or your loved one from becoming a victim of elder abuse. They will also look into reported incidents of abuse, neglect, financial exploitation, and self-neglect. Every county has a designated adult protective services agency. If you suspect an elder adult or adult at risk has experienced, is currently experiencing, or is at risk of experiencing abuse, neglect, self-neglect, or financial exploitation, your first step should be to contact the adult protective services agency for your county.

The publication “If You Care for Someone with Dementia, You Are Their Advocate” provides additional information about dementia and elder abuse and how to protect and advocate for a loved one at risk.

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 adult day care centers that will provide care only during the day to skilled nursing facilities 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: June 21, 2017

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