Over time, the symptoms of dementia will worsen. Judgement, sense of time and place, behavior, physical ability and senses can be impacted by the progression of these neurodegenerative diseases.
Learn about resources to assist in vital conversations about sharing the diagnosis, managing finances, planning long-term dementia care, and ensuring safety and wellness for both the patient and caregiver.
- Sharing a Dementia Diagnosis with Family
After a dementia diagnosis, a family meeting should be scheduled to discuss:
- What to expect as the disease progresses.
- Expectations for each member about the responsibilities of caregiving and designating a roles, if any, to family members.
- Legal, long-term care and future planning.
As emotions can be high during this time, it may help to have a neutral, third-party facilitator, such as a clergy leader, counselor or social worker, assist in leading a family meeting.
Visit the Family Caregiver Alliance for additional resources on determining who should attend a family meeting and which questions to discuss.
- Health Care Planning: Advanced Directives
Medical Power of Attorney: This document allows you to appoint someone to make health care decisions on your behalf when you are unable to do so. View >>
Directive to Physicians (Living Will): This directive allows you to specify the provision, withdrawal, or withholding of medical care in the event of a terminal or irreversible condition. View >>
Do Not Resuscitate (DNR): Inform healthcare professionals not to perform cardiopulmonary resuscitation (CPR) or any other life-support procedures if the heart or breathing stops. View >>
Brain, Organ and Tissue Donation: Request organs or body parts for scientific research upon death, ensuring no financial burden on families and no delays to funeral arrangements. Learn more >>
- Financial Planning
Will: Specifies how a person’s estate property, money, and other financial assets- will be distributed and managed when they die.
Durable Power of Attorney for Finances: Names someone who will make financial decisions for you when you cannot.
Living Trust: Names and instructs someone, called the trustee, to hold and distribute property and funds on your behalf when you can no longer manage your affairs.
A lawyer can help you prepare these documents.
A listing of lawyers can be found on the websites of your state bar association or the National Academy of Elder Law Attorneys.
- Long-Term Care Planning
Long-term care can be provided within the home or at an outside facility. The most common type of long-term care is personal care, which involves helping with everyday activities, also called activities of daily living. These activities include bathing, dressing, grooming, toileting, eating and moving around.
In-Home Care: Caregivers will likely reach a point when they realize they need additional assistance at home to help care for their loved one. If your loved one requires increased supervision and/or assistance with performing activities of daily living, consider additional assistance. There are many types of professional care options available to you. Ask your health care team for recommendations.
Outside Home Care
Adult Day Programs/Centers: Adult care programs are non-residential facilities that provide supervised social and recreational activities in a safe environment for individuals requiring assisted living, offering valuable respite for caregivers.
Assisted Living/Supported Care: Assisted living, sometimes known as supported care, is a transitional option between independent living and nursing home care. These facilities generally provide meals, supportive services, and health care tailored to each residents’ needs. However, not all assisted living centers offer specialized services for individuals with dementia.
Nursing Homes/Skilled Nursing Facilities/Long-Term Care Facilities: Nursing homes offer 24/7 long-term care. These facilities are licensed by the state and regulated by the federal government and typically provide care planning, recreational activities, social services, spiritual support and medical care options.
- Paying for Care
Medicare generally does not pay for long-term care needs in homes or facilities.
Costs for home care and facility services vary depending on what services are provided, where you live and the level of care.
Professional care in your home or an outside facility can be paid for privately by the care recipient/family, long-term care insurance, VA benefits and Medicaid.
Safety
Improving safety can prevent injuries, help a person living with dementia feel at ease and maintain independence longer.
To promote dementia safety and wellness, consider:
- Talking with your doctor about options for occupational therapy evaluation, a driving evaluation or a home safety assessment.
- A medical alert system watches with GPS tracking, motion-sensor alarms or video monitoring system to help monitor your loved one with dementia.