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Alzheimer’s Insights: Tips for dementia caregivers in long-term or community-based settings

Scott Finley

With the shelter in place order extended to the end of April, it’s more important than ever to continue addressing issues facing caregivers.

Emergency situations such as the current COVID-19 pandemic present special challenges to the delivery of Alzheimer’s and dementia care in long-term and community-based care settings, including nursing homes, assisted living, home health, home care and adult day care. People receiving care or utilizing services in these settings are particularly vulnerable to complications due to their age and other concurrent medical conditions.

Employees can also be affected in emergencies. Maintaining operations with the expected staffing shortages during any pandemic, epidemic or disaster can be very difficult. During this time, non-clinical staff may be needed to assist with care.

Caregivers in long-term or community-based care settings should consider the emergency preparedness guidelines from the Centers for Disease Control (CDC), in addition to the following suggestions for meeting the needs of persons living with dementia during a major disease outbreak or disaster.

Prevent illness during an emergency

Most likely, dementia does not increase risk for COVID-19, just like dementia does not increase risk for flu. However, dementia-related behaviors, increased age and common health conditions that often accompany dementia may increase risk.

Persons living with dementia may need reminders regarding:

  • Hand-washing and moisturizing. Caregivers should consider implementing a supervised hand-washing schedule.
  • Covering nose and mouth during a sneeze or cough.
  • Refraining from placing things in the mouth.
  • Staying in a particular area.
  • Taking medications appropriately.
  • Adopting social distancing practices and refraining from sharing items.
  • Following any other procedures that would require memory and judgment.

Provide person-centered care

One of the most important steps in providing quality dementia care is to know the person. In the event of a major disease outbreak or disaster, this may be more difficult for temporary staff members or those working in a new department or other health care setting.

It is recommended that a nurse, or social worker or staff under the supervision of licensed clinicians completes a HIPAA-compliant personal information form for each person and keeps it in an easily accessible place, such as inside a closet door in a folder attached to the back of a door.

Information on the form can include:

  • Individual’s preferred name (and pronouns); cultural background; religious or spiritual practices; and past hobbies and interests.
  • Names of family and friends.
  • What upsets the person and what calms him or her down.
  • Sleep habits; eating and drinking patterns and abilities; typical patterns of behavior; and normal daily structure and routines.
  • Remaining abilities, motor skills, verbal processing and communication abilities and methods.

Sharing information about a person living with dementia with the care team is very important in terms of providing quality, consistent and effective care. Given the care team may change frequently during a pandemic or disaster, briefing meetings at the start of the shift will allow the staff to share pertinent information about those receiving care.

Help keep families and friends connected

Individuals living in long-term care and community-based dementia care settings may need help communicating with their families and loved ones during a crisis. Caregivers can help keep families and friends connected through a variety of methods, including:

  • Scheduling telephone or video calls to keep connected and/or encouraging families and friends to send notes and photos.
  • Developing a “What You Should Know” fact sheet to explain what families, friends and staff need to know in the event of an emergency.
  • Providing information about how families can receive updates or talk to a care provider about the person living with dementia.
  • Ensuring that adaptive devices are available to the individual where appropriate, e.g., hearing aids and eyeglasses.

Remember that each family is unique. For some people, their closest supporters may not be biological or legal family members, but friends or community members.

Assist with eating and drinking

Especially when there is risk of contracting a virus, it is important for persons living with dementia to maintain their strength. Strategies to assist individuals with eating and drinking include:

  • Staff should familiarize themselves with the person’s eating and drinking patterns and abilities. He or she may need to be reminded or prompted to drink and eat as they might not be able to recognize hunger or thirst.
  • Verbal, visual or tactile cues such as high contrast dinnerware, adaptive utensils, graded approaches and modeling behavior may encourage individuals to eat and drink.
  • Sitting and talking with the person with dementia during meal times may improve intake.

Any evidence of difficulty in swallowing should be assessed by appropriately licensed clinical staff. Licensed or trained personnel should assist and monitor all persons with dementia who have been identified as having a choking risk or a history of swallowing difficulties.

Crises can be challenging, especially for individuals living with Alzheimer’s and all other dementia. With some careful planning and attention to the unique needs of those receiving care, professionals may feel more empowered to respond quickly and appropriately to support individuals living with dementia.

You can get more information about the Association’s emergency preparedness guidelines for Alzheimer’s and dementia caregivers in long-term or community-based care settings here:

https://alz.org/professionals/professional-providers/coronavirus-covid-19-tips-for-dementia-caregivers

If you have questions, call the Alzheimer’s Association 24/7 helpline at 800-272-3900 for more information.

 The Alzheimer’s Association leads the way to end Alzheimer’s and all other dementia – by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer’s and all other dementia. Visit alz.org or call 800.272.3900.

Scott Finley is Media Relations Manager for the Alzheimer’s Association® in Texas.  He can be reached at scfinley@alz.org