ALZHEIMER’S DISEASE CAREGIVER TOOLBOX
Are there national organizations that can provide resources at a local level?
Yes. For example, the Alzheimer’s Association (https://www.alz.org/) provides both national and local resources, including in-person and online support groups and an online discussion forum. They have a searchable database to find local resources, such as adult day cares, assisted living facilities, elder care attorneys, geriatric care managers, transportation assistance, and home health services. These can be found at https://www.communityresourcefinder.org/
Should I correct my loved one when confused about past or recent events?
It’s often upsetting for both the patient and friends or family members when the patient’s faulty memory is challenged. It’s best not to correct or confront the patient and to accept that you are living with their version of events. It may be helpful to distract your loved one when upset or unable to remember who people are or the background of a particular situation. If you try one solution to a distressing situation that does not get a good response, you will likely have another chance to figure out how best to discuss the situation. More information can be found at https://www.alz.org/helpsupport/caregiving/daily-care/communications or https://www.nia.nih.gov/health/alzheimerschanges-behavior-and-communication/dos-and-donts-communicating-person-who-has
How can a social worker help our family?
Please talk to your neurologist about finding local resources or ask to be connected with a social worker on staff. Social workers can direct patients and their caregivers to resources in the community, help determine what is needed for the patient and caregiver at any point, and provide advice to loved ones about addressing common scenarios that arise in Alzheimer’s disease. A national hotline is also available at https://alzfdn.org/contact-social-worker/
What about support groups? How can they help?
There are numerous in-person support groups, virtual support groups, and forums that can help connect both patients and caregivers or family members with others going through similar experiences. Preventing caregiver burnout is essential to maintaining health, and emotional support is just as important as medical support. These support groups can provide advice on what to do and what not to do as Alzheimer’s disease progresses. More information can be found at https://www.alz.org/help-support/community/support-groups
How do I address driving as Alzheimer’s disease progresses?
In addition to memory loss, Alzheimer’s disease will affect attention, concentration, visuospatial processing, and ability to follow directions. At some point, it will no longer be safe for your loved one to keep driving. Make sure to discuss the safety of continued driving with your loved one’s neurologist. Your DMV may also be able to conduct a driving test for a patient with Alzheimer’s disease to help determine when it is time for the patient to stop driving. It can be easier to get someone to stop driving if an outside source like the DMV says it isn’t safe anymore. Many communities will have organized transportation assistance for seniors who are no longer able to drive. See more information at https://www.nia.nih.gov/health/safety/driving-safety-andalzheimers-disease
Is there anything that can make medication management easier for patients and caregivers?
For patients who do not require frequent medication changes, services such as PillPack (https://www.pillpack.com/) can mail monthly pills that are already packaged by the day and time they should be administered. This prevents the need to sort medications into a pill box.
What about legal matters to manage a patient’s affairs as disease progresses?
An elder care attorney will be essential here. Ensure a Health Insurance Portability and Accountability Act (HIPAA) release form is on file with all doctors your loved one sees and with all applicable insurance companies. Have your loved one sign all necessary paperwork, such as a will, any trusts, power of attorney, and living wills as soon as possible to ensure their wishes are met. Make certain a caregiver or other family member is listed as a representative payee for Social Security Administration and Medicare, as they do not accept a standard power of attorney. More information can be found at https://www.alz.org/help-support/caregiving/financial-legalplanning/planning-ahead-for-legal-matters and you can google elder care attorneys in your area, though it can be helpful to ask for a referral from someone you know.
How can I protect my loved one financially?
Beware of financial scams. Ensure a caregiver or another family member has access to the patient’s bank accounts (ideally listed as power of attorney on the bank account), helps pay their bills, freezes credit, has banking or credit card transaction alerts, and is listed as an account manager for credit cards. More information can be found at https://www.nia.nih.gov/health/legal-and-financial-planning/managing-moneyproblems-people-dementia
When is it time to consider assisted living or home health care and how do I find options?
Residential facilities provide a safe space for older people and people with dementia to live; meals, medication management, activities, and increasing levels of care are available. Many facilities also include a memory care area specifically for patients with dementia who need extra care. These may be designed for patients to “age in place” and have options for independent living, assisted living, and memory care. Additional information can be found at https://www.alz.org/help-support/caregiving/care-options/long-term-care.
Home health care provides health care in the home for periods ranging from a few hours a day up to around-the-clock care. This can include medication reminders, meal preparation, errands, companionship, light cleaning, and more advanced medical care. A geriatric care manager may be able to help create an appropriate care plan for your loved one. Additional information may be found at https://www.alz.org/help-support/caregiving/care-options/in-home-care or https://www.alz.org/media/greatermissouri/geriatric_care_management.pdf