When a loved one is diagnosed with dementia or Alzheimer’s disease, it can be a challenging journey, especially in BIPOC (Black, Indigenous, and People of Color) communities where unique cultural and social factors influence care.

Initially, subtle symptoms like memory loss or increased disorganization can progress, impacting daily life significantly.

Behavioral and Psychological Symptoms in BIPOC Dementia Patients

BIPOC individuals may experience behavioral and psychological symptoms of dementia (BPSD) differently due to cultural perspectives on aging, mental health stigma, and historical mistrust of healthcare systems.

These symptoms can include agitation, aggression, hallucinations, and mood swings, necessitating tailored caregiving strategies that respect cultural beliefs and values.

These behavioral changes may worsen at the end of the day—and continue throughout the night. This behavior is called “sundowning”. Although the exact cause is unknown, it may be due to overstimulation during the day, insufficient exposure to sunlight, tiredness or hunger, or a disturbance to your loved one’s biological clock, confusing day and night.

Daily Care Tips for BIPOC Dementia Caregivers

As dementia progresses, BIPOC caregivers often face additional challenges related to cultural roles, family dynamics, and access to culturally competent healthcare services. Establishing daily routines, using culturally relevant communication techniques, and incorporating traditional healing practices can enhance care quality and patient comfort.

The U.S. Department of Health and Human Services’ Alzheimers.gov website has some great everyday dementia caregiver tips:

• Try to keep a routine, such as bathing, dressing, and eating at the same time each day.
• Help your loved one write down to-do lists, appointments, and events in a notebook or calendar.
• Plan activities that your loved one enjoys and try to do them at the same time each day.
• Consider a system or reminders for helping those who must take medications regularly.
• When dressing or bathing, allow the person to do as much as possible.
• Buy loose-fitting, comfortable, easy-to-use clothing, such as clothes with elastic waistbands, fabric fasteners, or large zipper pulls instead of shoelaces, buttons, or buckles.
• Be gentle and respectful. Tell the person what you are going to do, step by step, while you help them bathe or get dressed.
• Respect your loved one’s privacy. Close the door or cover them with a robe when helping them bathe or get dressed.
• Serve meals in a consistent, familiar place and give the person enough time to eat.

Managing Behavioral Changes in BIPOC Communities

Effective management of behavioral changes involves creating a supportive environment that respects BIPOC cultural norms and beliefs. Strategies like maintaining familiar surroundings, involving family and community elders in care decisions, and acknowledging spiritual or religious practices can help reduce agitation and promote emotional well-being.

Home Safety Considerations for BIPOC Dementia Patients

Effective management of behavioral changes involves creating a supportive environment that respects BIPOC cultural norms and beliefs.

Strategies like maintaining familiar surroundings, involving family and community elders in care decisions, and acknowledging spiritual or religious practices can help reduce agitation and promote emotional well-being.

• To reduce agitation:
  • Create a soothing environment and remove any objects that tend to trigger the behavior.
  • Maintain a routine and keep objects and furniture around the house in the same place.
  • Validate your loved one’s feelings. Any emotion they are feeling is very real to them.
  • Reassure your loved one that you are there to protect them.
  • Distraction is your best strategy.

• To address paranoia:
  • If your loved one thinks that something is “missing,” help them look for it—and then distract them with another activity.
  • Explain to other family members and anyone else in your loved one’s circle that these behaviors are all part of the disease—and are very real to your loved one.
  • Establish some sort of nonverbal reassurance to let your loved one know that you are there and will not let anything bad happen to them.

• To address sundowning:
  • Increase your loved one’s activity during the day. Discourage napping.
  • Pay attention to your loved one’s sugar and caffeine intake, particularly late in the day.
  • Plan a relaxing, but structured activity for the late afternoon and early evening hours, like a walk outside, listening to music, or playing a game.
  • Pay close attention to the toileting, pain, and nutrition needs of your loved one. Being uncomfortable – especially if your loved one cannot communicate their discomfort – can trigger these behaviors.
  • Don’t try to convince your loved one that their hallucinations or delusions are not true. It won’t work and is likely to make them more agitated. Instead, acknowledge and validate their feelings.

Home Safety Tips for Dementia Patients

Ensuring home safety for BIPOC individuals with dementia requires addressing specific cultural needs, such as dietary preferences, mobility challenges, and traditional healing practices. Installing culturally appropriate safety features like grab bars, ensuring access to culturally relevant emergency services, and providing information in multiple languages are crucial steps.

Planning for Future Care Needs

Planning ahead in BIPOC communities involves addressing unique financial, legal, and healthcare access barriers. Initiatives like community-based support groups, culturally tailored educational resources, and advocacy for equitable healthcare policies can empower BIPOC caregivers and enhance long-term care planning.

Resources for BIPOC Caregivers

For BIPOC caregivers navigating dementia care, resources like CAN’s “Lighting Your Way” provide valuable insights into managing behavioral symptoms and ensuring comprehensive care.

There are some steps that you should consider taking:

• Observe how well your loved one performs activities of daily living—bathing, eating, and getting dressed. Can they get around on their own? Are they able to manage their finances? How is their driving? Are they able to manage their medication?
• While they can help you, put together a full medical history. Other than dementia, do they have any health conditions? What medications are they taking? Have they had any past surgeries, and if so, why? Any allergies? What are the medical histories of their immediate family? Are there any diseases or major conditions?
• Get your loved one’s finances in order. Ensure you have all the account numbers, account balances, insurance policies, investments, and passwords so that you can manage their finances when they are no longer able. This is a difficult conversation to have, but it’s important.
• Put together a legal plan. Ensure that your loved one’s will and advance directives are up to date.
• Put all of your loved one’s important documents in a safe place—things like their birth certificate, marriage certificate, deeds or titles, legal documents, bank account information, insurance policies, passport, and medical records.

By understanding and addressing the unique challenges faced by BIPOC communities in dementia care, caregivers can provide more effective support and enhance the quality of life for their loved ones.

Other Resources for BIPOC Dementia Caregivers:

CAN’s Community is an online Facebook Group for caregivers that allows for a space free of stigma and fear.

Through the Caregiver Help Desk, you can connect with a caregiving expert to find a listening ear and the support you need—by phone, e-mail, or chat.

Sometimes, it helps to talk to people who have been through similar situations and faced the challenges you’re facing. The right support group can be a place to ask questions and talk about what you’re feeling with people who understand.