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November 16, 2021

Safety Planning for Persons and Families Living with Dementia

by David Godfrey, Senior Attorney, Commission on Law and Aging

The PDF in which this article appears can be found in Bifocal Vol. 43 Issue 2.

Most persons should think about basic safety planning as unexpected threats can disrupt even the seemingly most serene of lives. Who amongst us two years ago would have dreamed that our offices would be closed for weeks or months because of a virus? A little basic planning can avoid moments of panic when moments can make a big difference. This is especially important for persons and families experiencing serious illness, including dementia.

Sudden changes can be especially challenging for persons with dementia. Planning ahead for care and comfort needs and having a plan so other are less panicked can make an emergency less traumatic for everyone.  Planning can result in greater safety.  If the person with dementia lives independently (alone) working with others to create an emergency plan can be lifesaving. I urge professionals that are counseling persons who are experiencing changes in cognition to encourage the person and their family to engage in basic safety planning.

The first consideration are the essentials for the Person’s care and safety needs should you need to relocate with little or no notice.

  • A basic emergency evacuation bag may contain the following for each person: 
    • Fresh clothing for a couple of days – consider the seasons
    • Necessary medication for a couple of days – plus frequently used over the counter medication
    • Consumable medical supplies
    • Personal care items, familiar soaps, shampoos, toothbrush, toothpaste, haircare items – the goal here is to cause the least amount of change possible in the care of a person with dementia.
    • Keys - car keys, house keys, office keys, keys for a home you might evacuate to
    • Cash – there are times when cash will work and credit cards don’t.
    • Enough cash to pay for food and shelter for a couple of days
    • Credit and debit cards
    • Cell phone charger or emergency backup power pack for phone
    • Duplicate cables for charging tablet or portable computer
    • Names and contact information for family, friends, health care providers, employer
    • Personal comfort items; something comfortable and familiar. This can be things like a hat, a pillow, blanket, photos, familiar music, or a stuffed animal.  Think of something that makes the person feel comfort or security.   
    • Emergency care supplies for pets that you’re taking along you.
    • Bottled water, shelf stable food for a few hours
    • This bag should be packed, easy to grab and ready to go. It may even be kept in the trunk of the car.
  • A short list of things to grab on the way out the door.
    • Cell phone (if possible, keep a back-up phone in the emergency bag, a prepaid phone will work.)
    • Tablet or portable computer with access to essential online resources
    • Have stored in the cloud, access information for essential services such as banking and health care
  • Have a plan for where you are going
    • If you are force to leave in a hurry, where are you likely to go, and how are you going to get there?
    • Many people evacuate to the home of family member or friends.
    • If the issue is just in your home, someplace local such as a neighbor or nearby family member.  
    • If the threat is regional, such as a storm, riot, earthquake, or fire, you should have a plan for a place outside the zone your home is in.  
    • Knowing where you are likely to go, will save precious minutes or hours, and reduce the sense of panic.

As dementia progresses it can result in unexpected changes in behavior. Some persons with dementia will develop delusions – strongly held beliefs that have no rational or factual basis. Some will experience hallucinations, experiencing things or people that are not there. Some will experience delirium, resulting in impaired cognition, confusion, disorientation, or illusions.   When a person is experiencing delusions, hallucinations, delirium, confusion, or disorientation, they can act in ways that are totally unexpected, in ways that can present a danger to the person or to those around them.

Case Example

The Jewelry store on Main Street was opened 50 years ago by Frank and Mary. Their adult sons now work with them in the business. After an armed robbery 40 years ago, Frank started keeping a loaded handgun in the drawer of his workbench.  Frank is now living with dementia. Mary returned to the store late one afternoon from making a bank deposit. Frank was disoriented and mistook her for a criminal and shot and killed her.

  • Every year we read tragic stories of a person living with dementia, while in a moment of disorientation, delusion, hallucination, or delirium injuring or killing a loved one.
    • Every person diagnosed with dementia should be counseled that the illness may result in them harming a person they love, not because of a real threat, but because the illness may change their perception of what is happening around them.
    • Urge the person to secure or get firearms out of the home or out of their reach
    • Use a gun safe
    • Use trigger locks
    • Remove parts that render the weapon unusable
    • Remove ammunition  
    • Have another person safely store guns
    • If the person is resistant to removing the guns, try to make the guns complicated or hard to use.  A person with dementia that’s progressed to the stage of mistaking a loved one for a threat, may struggle to perform complex steps. There is some threat as long as weapons are in the house, but we can reduce the threat by making using the weapons beyond the ability of the person to easily use.
  • In addition to making the home safer, caregivers should create a safety plan in the event that the person living with dementia becomes a threat to their safety. 
    • This starts with the basic emergency kit described above being ready to go for the caregivers.
    • Generally, the threat from the person with dementia is short lived, a matter of minutes to an hour or two. If the unsafe behavior extends beyond that, medical help should be sought.
    • The plan for safety needs to be short term.  Being able to go to the home of a family member, friend, neighbor, or the local coffee shop, and doing so safely is essential.
    • Some families report that keeping a second set of car keys hidden outside or having keys to a neighbor’s home in a hidden location outside the home can be very helpful.
    • The goal of while leaving for safety is ensuring the well-being of the person with dementia. This is where modern technology and remote monitoring cameras have changed the world. In a moment of agitation that rises to the point of being threatening, being able to go to Starbucks and watch on video while the person calms down or takes a nap and waiting until it is safe to return to the house can make all of the difference in the world.    

Case Example

Fred is a person living with dementia, in the community cared for by his wife Wilma, in a typical suburban home, with a green front lawn, short driveway and a mailbox along the street.  Fred developed a delusion that Wilma was having an affair and was going to leave him.  The delusion was focused on her walking out and talking with the postman, a friend that they had known for decades. They had argued and fought over his insistence that she was having an affair with the postman and planning to leave. (Arguing with a person with dementia never helps.) One day when Wilma came in with the mail, Fred attacked her with a hammer.  Fortunately, she recovered from her injuries.  Unfortunately, the police arrested Fred, and the prosecutor and courts struggled with what to do. 

  • It is impossible to remove from the home, everything that might possibly be used as a weapon.  (Another case report involved a cast iron frying pan.)
    • Looking at Fred and Wilma, there was awareness of Fred’s obsession.  Reasoning with a person with dementia may work sometimes, but it didn’t here. 
    • Other steps could have been taken to allay Fred’s fears. If he had walked with her to the mailbox and taken part in the conversation with an old friend, likely he would not have had the same reaction. If another caregiver had been there to engage Fred while Wilma went to the mailbox, he likely would not have had the same experience. If Wilma had waited until the postman finished the street, shown Fred that no one was there and then walked out to get the mail while he watched, things most likely would have been different. 
    • We need to develop behavior management skills for family members and caregivers of persons living with dementia.       

Conclusion: How Does This Fit in With Lawyers and Practice of Law?

Understanding and encouraging basic safety planning needs to be a part of the same advance planning counseling that lawyers engage in with clients and their families when working with someone experiencing symptoms of dementia.  Just as we should urge arrangements for financial management, personal care arrangements and health care decision making, we need to include a conversation about safety planning.  It is a much easier conversation to have than the conversation when a tragedy has happened.