Living with Dementia

As dementia progresses, driving can become increasingly dangerous. Individuals with dementia may become unable to handle the car properly or lose their sense of direction. This can be a difficult topic to discuss as the inability to drive is often associated with a loss of independence. When planning for long term changes associated with dementia, discuss driving and how will you determine when it’s time to stop getting behind the wheel. 

The Tennessee Department of Transportation (TDOT) has a resource guide on “Driver Safety for Tennessee Seniors” which discusses how to know when to stop driving among other topics.

TDOT also has a program called the Yellow Dot Program which aims to ensure emergency services are aware of important medical information in the event of an accident or emergency. Participants in the program place a Yellow Dot bumper sticker on their car and complete a yellow packet of information to place in their glove compartment. In the event of an emergency, emergency personnel see the bumper sticker and know to check the glove compartment for information.

This program is open to everyone but can be especially beneficial for individuals with dementia and their caregivers. In the event a person with dementia is unable to identify themselves, emergency personnel can check the glove compartment for information. If a caregiver is an accident, emergency personnel can be informed there is a person with dementia at home or identify the passenger as a person with dementia. Being aware of medical conditions and medications helps emergency personnel make critical decisions in responding to a crisis. You can learn more about this program on TDOT’s website and order Yellow Dot program materials for free online.

As Alzheimer's disease and related dementia progress, a key challenge becomes medication management.  The inability to remember when or if a medication has been taken can pose serious health challenges to the individual with dementia. Tracking when and if a medication has been taken can also put a significant stress on caregivers.  

Although dementia and its underlying disease may quickly become the most prominent health condition, many individuals suffering from Alzheimer's and related dementias have multiple other chronic health conditions to manage at the same time. In fact, 80% of individuals with Alzheimer's Disease and related dementia also have a form of cardiovascular disease (high blood pressure, diabetes, or high cholesterol) which often requires additional medication.¹

Missing a medication or doubling a dose can have severe life-threatening complications depending on the medication. To ensure medications are taken timely and to relieve the stress of medication management on behalf of the caregiver, some steps can be taken:

First it may be helpful to record each medication prescribed and some details about it. An example of a form to help you manage your medication can be found here.

• Medication can be tracked simply using paper or online tracking sheet! This can also then be brought into your doctor’s appointment to note if you’ve missed any medication. An example of a medication tracking sheet can be found here (separate form developed)
• Using a pill box is one of the most straightforward ways to track your medication. At the beginning of each week distribute dosages per day or time of day to be taken. Pill boxes can be found at any local drug store. 
• Pill Cap Timers are a relatively inexpensive way to ensure that a person with dementia can’t access medication multiple times in a day. The pill cap timer will only allow the bottle to be opened as scheduled, such as every 12 hours. One challenge to using a pill cap timer is the inability to simultaneously make use of a pill box. Pill cap timers can be found at most local pharmacies. 
• Although it can be costly, automatic pill dispensers  can be life-changing for caregivers experiencing the stress of medication management. An automatic pill dispenser only distributes medication at the correct time and in the correct dosage. 
• Some pharmacies now offer medication packs. For example, CVS offers a service called Multi-Dose or Multiple Rx at no extra cost. All prescriptions are put in packs by dosage and are labeled with the date it should be taken, time of day it should be taken, and a list of each prescription in the pack.² The packs can be picked up or delivered in 30-day supplies. For more information on CVS Multiple Rx service, visit here. Talk to your pharmacy about similar services that may be available. 

A well-known behavioral symptom of Alzheimer's disease and dementia is “wandering,” or becoming disoriented and getting lost. This happens because dementia can cause an individual to not recognize surroundings, lose sense of direction, or become confused on where to go. Wandering behavior is extremely dangerous and must be monitored closely and prevented when possible.

Click here  to watch the Alzheimer’s Tennessee Caregiver Academy video on wandering.

There are multiple services and systems available to assist if a loved one has wandered. If the person is in immediate danger always call 911. 

• Alzheimer's Association Safe Return and MedicAlert work together to provide 24/7 nationwide emergency response system for persons living with Alzheimer's and related dementia who are wandering or have an emergency.⁴
• Alzheimer’s Tennessee FOUND program with MedicAlert is a 24-7 nationwide response for those with Alzheimer’s and related dementia who wander.
• Silver Alert is a United States public notification system to alert the public of a missing person, such as a person with disability or an older adult, including individuals with dementia. Activating a Silver Alert can be beneficial for finding a person with dementia who has wandered. In Tennessee, Silver Alerts are managed by local law enforcement agencies. Protocols vary between agencies in the state. Contact your local law enforcement agency for information on issuing a Silver Alert for a missing person.  
• If the individual with dementia has a smart phone, enable “Share My Location” or “Find My Phone” features. This will enable a caregiver or loved one to see the phone’s location which could be of assistance in locating a person with dementia.
• Consider getting an identification bracelet with emergency contact information for the individual living with dementia.
• There are a variety of medical device bracelets with trackers that vary on price range, and effectiveness. Take time to look into which may be right for you and your family.

The progression of dementia includes loss of spatial awareness and depth perception, putting those with dementia at increased risk for falls. According to the National Institute on Aging, several steps can be taken to reduce the chance of fall including:⁴

• Clean up clutter
• Remove throw rugs
• Use chairs with arms
• Put grab bars in the bathroom
• Use good lighting
• Wear shoes with good traction

It’s important to address the living situation, including the physical aspects of the home, for safety concerns. Living alone may pose a risk for persons living with dementia. As cognition declines, persons living with dementia may be unable to cook, clean, and perform self-care. Additionally, common household items such as stoves, personal hygiene razors, firearms and others may pose a danger to someone with dementia, especially if they live alone. After a dementia diagnosis, it is important for the individual with dementia and the family to regularly discuss living situation and home environment throughout the progression of disease to always ensure the safety of all involved

The Alzheimer’s Association has Safety Assessment Checklist  to make sure your home is safe!

Alzheimer’s Tennessee has a Safety Resource guide to make sure you have all the resources you need to have a safe home.

Special considerations in emergency planning need to be taken to accommodate those living with dementia. Maintaining a routine and familiar setting is important for individuals with dementia. A change in routine or location could lead to increased behavioral changes in an individual with dementia, including increased wandering or agitation. 

An important part of emergency preparedness is having a kit together to ensure you and your loved ones have access to necessities. 

According to the Tennessee Emergency Management Agency (TEMA), in addition to Basic Disaster Supplies these items may need to be included in emergency kits for senior citizens: 

•  Weeks’ supply of medications
• Back-up plan for regular medical treatments
• Back-up plan for medical devices requiring electricity
• Extra eyeglasses
• Extra hearing aid batteries
• Extra wheelchair batteries
• Extra oxygen
• Mobility devices, such as canes or walkers
• Records of prescriptions, dosage, and treatment info
• Copies of medical insurance cards
• Copies of Medicare or Medicaid cards
• Family contact information
• Copies of important documents (bank information, wills, medical directives)
• Cash or travelers checks

Other items to consider include:⁵

•  Incontinence products
• Picture of individual with dementia
• Identification items such as an ID bracelet
• Printed list of emergency contacts
• Information on and directions to local emergency shelters
• Plans for alternative transportation

For more information on creating a complete Emergency Kit, please visit the Tennessee Emergency Management Agency website.