A First Step Is Public Education and Understanding
A safer and higher quality of life is enjoyed by persons living with dementia in communities that promote understanding of dementia and how to help a person living with dementia. The symptoms experienced by a person with dementia can be as simple as confusion or forgetfulness, or more complex such as delusions, hallucinations, delirium, and can be misinterpreted as intoxication, mental illness, or criminal intent. A key is understanding when encountering an adult whose communication and behavior is different than expected, that the person may be living with dementia.
Beyond Mild Cognitive Impairment, a few questions will usually lead to understanding that the person simply needs kindness and help. The ABA Commission on Law and Aging is finishing up a research project on the interaction of persons living with dementia and the criminal justice system. Communities that have provided targeted training to front line first responders including law enforcement are much less likely to arrest persons with dementia. Training should be provided by experts in understanding how dementia changes cognitive function and how best to provide help for the person.
Dementia Friendly America
There is a national network of community advocates and organizers with a singular goal of creating dementia friendly communities known as Dementia Friendly America (DFA.) You can find details at https://www.dfamerica.org/. These are broad community wide, interdisciplinary efforts that integrate age friendly and dementia friendly efforts to create communities that are aware of and actively create accommodations for persons living with dementia across the broadest possible spectrum of the community. The efforts include working with businesses, banks, law enforcement, first responders, health care systems, faith communities, housing, transportation, public spaces, restaurants, grocery stores, libraries, employers, residential care, and community services to enable people with dementia and care partners to thrive. As of the last update, DFA communities are in various stages from early planning to complete implementation in 40 states.
DFA started as a demonstration project under the Older Americans Act and continues on with leadership from USAging, and financial support from sponsors, members, and a dedicated group of volunteers. Local groups are often hosted by government agencies or independent advocacy groups. DFA provides tools for communities involved in becoming friendlier, safer places to live with dementia. I have been on the advisory board of DFA since the first organizational meeting. If there is not a DFA effort in your community, volunteer to help organize one.
Technology Is Making Life Safer
Getting lost is one of the greatest fears for a person living with dementia, and their families and friends. Ongoing developments in tracking technology are providing peace of mind. As memory changes, people sometimes find themselves lost even in familiar surroundings. In the past, tracking devices were bulky or cumbersome, no one wants to live with an ankle bracelet. Tiny devices designed to help us find our keys and cellphones are proving invaluable. I am hearing reports of family members clipping an Apple Air Tag ® and other similar locater tags onto keys, belts, the lining of clothing, or into the glove compartment of the car, giving the family peace of mind and persevering the freedom and dignity of the person living with dementia to move about as they please, knowing that the person can be easily found if they don’t return as expected.
Video monitoring allows oversight without a physical presence. Caregivers of persons with dementia fear being away, even for a short period of time and many persons with dementia want to live independently as long as possible. Video monitoring has never been easier, and the quality has never been better. There is a plethora of simple plug and play devices on the market that can be monitored from smart phones, or computers a world away. Video monitoring is an infringement on privacy and in some areas requires express consent. This option should be discussed with the person living with dementia and everyone having access to or living in the space. For many this is a balancing act between safety, privacy, and independence. Some of these devices include two-way sound, allowing communication between the person and the observer. This can empower the person with dementia to ask questions, or the person monitoring to check in without a phone call.
New generations of smart watches and wrist worn health monitors include fall monitors and track various health indicators. The accuracy and reliability of these devices seem to be improving each year. This is an evolving area of technology that is making a difference, and we can expect it to continue to develop. One challenge is to be of value, the devices must be worn and charged.
Misplaced keys or even the physical operation of locks can be a challenge for a person living with dementia, and lock outs can lead to tragic results. Electronic locks that are activated by wrist bands, tags, or fobs have advanced in leaps and bounds over the past few years.
The newest generation of these devices assure security and ease of access as the doors are always unlocked when the person carrying the tag is nearby.
Baby Boomers that are approaching Medicare eligibility today, have had a cell phone / smartphone in their pocket for 20 plus years. For many the mobile phone has become an essential part of their life; for many it is their only phone. Smart phones have several features that make them ideal for a person living with dementia. The phone locations are easily trackable. The built-in navigation functions can help with direction finding for a person with mild cognitive impairment. The voice activation functions can empower searches and phone dialing. One touch dialing and voice to text can empower communications.
Voice activated household devices are rapidly developing. Already we are hearing reports of persons living with mild cognitive impairment asking “Alexa” to play their favorite music or remind them to take their afternoon medication. This is still an evolving area, and users need to be accustomed to using the devices.
Regarding all of the technology, it is important to remember that it is changing at light speed. Options are available today, that were not available five years ago.
A Silver Lining from COVID-19?
The vast majority of caregivers of persons living with dementia are family and friends, many of whom have struggled in the past to maintain paid employment and be a caregiver. However, there is a revolution in work from home that has taken place over the past two years. Here at the American Bar Association, we went from less than 3% of our staff being telecommute ready, to over 99% in less than a week. One of the reasons cited in extending liberal telework policies or implementing flexible work policies has been balancing the need of family caregivers and work. These practices help caregivers of persons living with dementia to work and be available as needed as a caregiver. Many employers are now allowing work from home on jobs that had previously required being in the office. Telework allows caregivers to earn a living while providing care and supervision. Over 80% of care for persons living with dementia is provided in the community by unpaid family and friends. Telework does not work for all jobs, but it does for many, easing some of the financial burden for family and friends as caregivers.
Supporting Caregivers
Expansion of adult day programs that include social engagement and enrichment activities such as music and art in an atmosphere that values and supports the person living with dementia provides much needed outside interaction for the person and much needed respite for the caregivers. Caregiving can be exhausting, and social isolation can negatively affect a person living with dementia and caregivers. In his book, The Problem of Alzheimer’s, Dr. Jason Karlawish writes of “prescribing” quality day programs as part of a course of care for persons living with dementia. Government funding for day programs has expanded, but the demand still exceeds the supply. When you consider that the alternative to $75 per day, day program may be a $300 per day nursing home, the day program becomes more attractive. Dr. Karlawish encourages families to at least try, and most often find that the person living with dementia finds the program engaging and refreshing. It can also lessen the stress of the person living with dementia to see that the caregiver, most often a loved one, is refreshed by having had an opportunity to relax or attend to their personal needs.
Conclusion
Communities are becoming more dementia friendly, and guidance from Dementia Friendly America provides a model. Changes in the workplace and in community services are creating more opportunities for balance. Rapid changes in technology are making homes and communities more friendly for persons living with dementia.
