Caring for a loved one with Alzheimer's or Dementia

According to the Illinois Department of Public Health, in 2020, there were 230,000 people over 65 years of age living with Alzheimer’s disease or a related dementia in Illinois. This figure is projected to reach 260,000 in 2025, a 13% increase. Simultaneously, there is an increasing shortage of direct care providers in the aging, disability, and public health networks. In 2021, approximately 383,000 Illinois caregivers provided more than 486 billion hours of care to someone living with a dementia. That unpaid value of care is more than $8.8 billion.

Dementia is defined as a decline in mental ability that is severe enough to impact an individual's daily life. This means having new problems with everyday activities and may or may not include memory dysfunction.

Dementia refers to the group of symptoms that occur when the brain is damaged by disease. A diagnosis of dementia requires impairment in two (2) or more core mental functions: memory, language skills, visual perception, ability to focus and pay attention, ability to reason and solve problems. There is no cure for dementia; progressive mental and cognitive decline is inevitable.

If you suspect a loved one is living with dementia, early diagnosis can provide an opportunity for early interventions and care and allow the individual to participate in the decision-making process. Always seek the counsel of a healthcare provider, since some conditions presenting as dementia are reversible, such as: infections and immune disorders, diet, chemical imbalances, mismanagement of medicines and/or drug interactions, alcohol abuse, depression, toxins, carbon monoxide, isolation/sensory deprivation.

Resources for Caregivers

• Training for Caregivers: Caregivers can complete online training videos and read information to better understand how to care for a loved one with Alzheimer’s or dementia. There are several organizations that offer free, 24-hour access to training videos and other materials including The Alzheimer’s Association, SIU School of Medicine Smith Center for Alzheimer’s Research and Treatment, UCLA Health, and the Family Caregiver Alliance.
•  Assessment of Caregiver Needs: AAAs can refer caregivers to other programs after assessing the caregiver’s needs using a tool called TCARE. These programs can include Savvy Caregiver®, Stress-Busting Program for Family Caregivers™, support groups, counseling services, and gap filling services. If you are interested in learning more, contact your local Area Agency on Aging (AAA) using the map tool.
  
• Respite: Respite services are intended to provide caregivers with short-term relief; the length and locations may vary, but respite may be provided for an afternoon, several days, at home or in a facility-based setting. If you are interested in learning more about respite services in your area, contact your local AAA using the map tool, or the Illinois Respite Coalition using the search tool.       

Resources for Older Adults Living with Dementia

• Regional Alzheimer’s Disease Assistance Centers: There are three Regional Alzheimer’s Disease Assistance Centers in the State:
  • Northwestern Mesulam Center for Cognitive Neurology and Alzheimer’s Disease
  • Rush Alzheimer’s Disease Assistance Center for Northern Illinois
  • SIU School of Medicine Dale and Deborah Smith Center for Alzheimer’s Research and Treatment
• IDoA’s Community Care Program: The Community Care Program (CCP) provides services to older adults who might otherwise need nursing home care to help them remain in their own homes. If you are interested in learning more about CCP, find your local Care Coordination Unit (CCU) using the map tool.

Partnerships and Other Resources

• Illinois Cognitive Resources Network: A State-based coalition to improve access to resources for cognitive health.
• Dementia Friendly Illinois: Aims to support the recognition of at least one community in each of the thirteen (13) Planning Service Areas in Illinois as being part of Dementia Friendly America.
• Illinois Family Caregiver Coalition: An inclusive, statewide, non-partisan coalition to support unpaid and information caregivers.
• Latino Alzheimer’s and Memory Disorders Alliance: Educates and engages Latino caregivers of Alzheimer’s and memory disorders family members by providing skill building training, and compassionate support programs.
• State of Illinois Alzheimer’s Disease Plan: A plan to strengthen dementia capability in Illinois.
• Illinois Department of Public Health - Dementia Resources: Administers programs to deal with persistent public health problems that require continued vigilance.
  • Alzheimer’s Association Illinois Chapter: Works to accelerate global research, drive risk reduction and early detection, and maximize quality care and support.
    
• Alzheimer’s Foundation of America: Provides support, services and education to individuals, families and caregivers affected by Alzheimer’s disease and related dementias nationwide, and funds research for better treatment and a cure.
• Centers for Disease Control and Prevention – Alzheimer’s Disease and Healthy Aging: Provides evidence-based, scientific information to educate, inform, and assist translating research into public health practice.
• Alzheimers.gov: Connects people to the many federal resources available to educate and support people whose lives are touched by Alzheimer’s disease and related dementia.