Caring for Your Loved One with Dementia

A Guide for Family Caregivers in South Africa

“Caring for a loved one with dementia is a journey that requires patience, love, and knowledge. This guide is designed to support you along this path with practical advice based on research and the experiences of South African families.”

Understanding Your Loved One's Needs

Seeing the Person, Not Just the Dementia

Remember that your loved one is still the same person at heart, even as dementia changes their abilities. Their life history, preferences, and personality remain important.

What You Can Do:

  • Create a "Remember Me" Book: Collect photos, stories, and memories in a book that:

    • Shows important relationships and family members

    • Highlights their achievements and proud moments

    • Records their favorite foods, music, and activities

    • Documents daily routines they've followed throughout life

  • Notice What Still Brings Joy: Watch for activities, foods, or music that create positive reactions, even if they can no longer tell you what they like.

  • Offer Simple Choices: Whenever possible, let your loved one make decisions:

    • "Would you like to wear the blue shirt or the green shirt?"

    • "Should we have tea now or after we sit in the garden?"

    • Use actual objects or pictures rather than just words

  • Honour Cultural Traditions: Incorporate familiar cultural practices, foods, music, and languages that have been important throughout their life.

From Research to Your Home: Studies at the University of Cape Town found that when caregivers included familiar cultural elements in daily care, their loved ones showed less anxiety and more engagement.

Creating a Safe and Supportive Home

Making small changes to your home can significantly reduce confusion and help your loved one maintain independence longer.

What You Can Do:

  • Help with Finding Their Way:

    • Put pictures or signs on important doors (toilet, bedroom)

    • Use bright colors to mark important areas

    • Keep items in the same places

    • Keep photos of family members visible

  • Prevent Common Accidents:

    • Remove loose mats or secure them firmly

    • Clear walking paths of furniture and cords

    • Install inexpensive grab bars in the bathroom

    • Store dangerous items (medications, cleaning supplies) out of sight

    • Use night lights to prevent falls during nighttime toilet trips

  • Manage Stimulation:

    • Reduce background noise when possible

    • Create a quiet space for rest when things get overwhelming

    • Provide simple activities that engage without frustrating

    • Consider how heat, light, and noise affect behavior

  • Affordable Solutions:

    • Use painted rocks to create garden path markers

    • Repurpose plastic containers with clear labels for organizing

    • Create homemade door signs using family photos

    • Use solar garden lights for nighttime pathway lighting during load-shedding

From Research to Your Home: Families who made simple home modifications reported 60% fewer falls and significantly less stress, according to Stellenbosch University research.

Communicating with Love and Patience

As dementia progresses, how you communicate becomes increasingly important. These approaches can help you stay connected even when words become difficult.

What You Can Do:

  • When Speaking:

    • Get their attention gently before starting to speak

    • Talk face-to-face in a well-lit area so they can see you

    • Keep sentences short and simple

    • Speak slightly slower but still naturally

    • Ask one question at a time and wait patiently for a response

  • Beyond Words:

    • Use gentle touch on the hand or shoulder when appropriate

    • Demonstrate what you mean instead of just explaining

    • Pay attention to your facial expressions and tone

    • Use gestures along with words

    • Remember that your calm presence communicates safety

  • Listening with Your Heart:

    • Focus completely on what they're trying to communicate

    • Watch for feelings behind confused words

    • Never argue about facts or correct them unnecessarily

    • Validate emotions even when stories aren't accurate

    • Be patient with repeated questions or stories

  • Language Considerations for South African Families:

    • Return to your loved one's mother tongue as dementia progresses

    • Learn key phrases in their first language if different from yours

    • Bring a family translator to medical appointments if needed

    • Remember that language abilities may be better in the morning

From Research to Your Home: Wits University research showed that people with dementia respond much better in their first language, even if they've spoken English or Afrikaans fluently for decades.

Understanding Behavior Changes

Challenging behaviors are often your loved one's attempt to communicate needs they can no longer express clearly. Understanding possible triggers helps you respond with compassion.

What You Can Do:

  • Become a Detective:

    • Keep a simple notebook to track when difficult behaviors happen

    • Note the time of day, who was present, and what happened before

    • Look for patterns related to basic needs like hunger, thirst, or needing the toilet

    • Consider if the environment is too hot, cold, noisy, or overwhelming

  • Respond to Common Situations:

    • Wandering:

      • Create safe walking paths inside and in secured outdoor areas

      • Place a "STOP" sign or curtain over exit doors

      • Provide meaningful activities during restless times

      • Consider an ID bracelet with your phone number

    • Agitation or Anger:

      • Stay calm and speak softly, even if they're upset

      • Check for physical discomfort or pain

      • Move to a quieter, less stimulating environment

      • Redirect attention to a favorite activity or snack

      • Never argue or try to force cooperation

    • Repeated Questions or Actions:

      • Answer calmly each time, using the same simple words

      • Consider if the repetition is expressing an emotional need for reassurance

      • Gently redirect to an engaging activity

      • Sometimes a written note can help with common questions

  • Community Support in South Africa:

    • Inform trusted neighbors about your loved one's condition

    • Connect with nearby families caring for people with dementia

    • Explore if your church or community center offers respite programs

    • Consider traditional community support systems that can be adapted for dementia care

From Research to Your Home: South African research found that when caregivers focused on identifying unmet needs rather than controlling behaviors, difficult situations decreased by nearly half.

Providing Good Nutrition

People with dementia often experience changes in appetite, food preferences, and eating abilities. Ensuring good nutrition requires creativity and flexibility.

What You Can Do:

  • Make Mealtimes Successful:

    • Establish regular meal times in a consistent location

    • Remove distractions (turn off TV, clear clutter from table)

    • Use contrasting colors (dark plate on light tablecloth)

    • Serve one food at a time if multiple options cause confusion

    • Allow plenty of time for eating without rushing

  • Adapt Food as Needed:

    • Cut food into bite-sized pieces if coordination decreases

    • Provide finger foods when utensil use becomes difficult

    • Thicken liquids if swallowing thin fluids becomes problematic

    • Be aware that very hot food may be eaten before it's recognized as too hot

    • Try different textures and flavors as preferences change

  • Prevent Dehydration:

    • Offer drinks regularly throughout the day

    • Provide water in a clear glass that's easy to see

    • Include fruits with high water content between meals

    • Be especially vigilant about hydration during hot weather

    • Watch for signs of dehydration (dry mouth, dark urine, confusion)

  • South African Food Considerations:
    Adapt favorite traditional foods for easier eating:

    • Soft pap with gravy instead of stiff pap

    • Tender slow-cooked vegetable stews with meat cut into small pieces

    • Use familiar spices and flavors from your family's background

    • Prepare extra food during cooking for easy reheating during busy days

From Research to Your Home: South African nutrition research found that adapting traditional foods was much more successful than introducing unfamiliar "special" diets, with people eating up to 30% more when served modified versions of familiar dishes.

Helping with Sleep Problems

Sleep disturbances are common and can be exhausting for everyone involved. Establishing good sleep patterns makes a significant difference in quality of life.

What You Can Do:

  • During the Day:

    • Encourage some form of physical activity every day

    • Ensure exposure to morning sunlight (opens curtains, morning walk)

    • Limit long naps, especially in late afternoon

    • Keep days structured with regular meal and activity times

    • Provide mental stimulation through appropriate activities

  • Evening Routine:

    • Begin quieter, calming activities 1-2 hours before bedtime

    • Reduce lighting to signal that sleep time is approaching

    • Follow a consistent bedtime routine (wash face, change clothes, quiet talk)

    • Consider a light snack like milk or banana before bed

    • Ensure bathroom needs are addressed before sleep

  • Nighttime Environment:

    • Make sure the bedroom is comfortable and familiar

    • Use night lights to prevent disorientation during nighttime awakening

    • Keep essential items within reach (water, tissues)

    • Reduce noise as much as possible

    • Make sure bedding is appropriate for the temperature

  • South African Considerations:

    • During summer heat, use wet cloths or spray bottles for cooling before sleep

    • During load-shedding, have battery-operated fans and lights ready

    • In urban areas, use white noise (fan, radio static) to mask neighborhood sounds

    • In rural areas, ensure windows are properly screened against insects

From Research to Your Home: KwaZulu-Natal University researchers found that families who established consistent daily routines reported half as many nighttime awakenings and better daytime mood.

Keeping Active and Engaged

Physical activity improves mood, sleep, and physical health while potentially slowing decline. Finding appropriate and enjoyable activities is key.

What You Can Do:

  • Safe Movement Ideas:

    • Take short, regular walks in familiar areas

    • Do seated exercises together (arm circles, leg lifts, gentle stretching)

    • Dance to favorite music from earlier years

    • Practice standing from sitting with support of sturdy furniture

    • Focus on activities that maintain balance and strength

  • Make Movement Meaningful:

    • Involve your loved one in simple household tasks (folding laundry, wiping tables)

    • Spend time in the garden watering plants or picking flowers

    • Walk with a purpose (to check the mail, feed birds, or visit a neighbor)

    • Incorporate movement into daily routines rather than as "exercise"

    • Continue adapted versions of physical activities they've always enjoyed

  • Stay Safe:

    • Ensure proper supportive shoes that fit well

    • Remove hazards before starting activities

    • Provide appropriate support (walking stick, your steady arm)

    • Watch for signs of fatigue or frustration

    • Adjust activities based on energy levels, which may vary daily

  • South African Cultural Activities:

    • Play favorite local music that encourages movement

    • Practice simplified versions of crafts that your loved one may have previously enjoyed

    • Engage in culturally familiar garden activities with local plants

    • Modify traditional games for current abilities

From Research to Your Home: UCT research showed that when physical activities connected to cultural traditions and had meaning beyond "exercise," participation increased by 65% and resulted in better mood and sleep.

Taking Care of Yourself

Your well-being directly affects your ability to provide good care. Self-care isn't selfish—it's essential for sustainable caregiving.

What You Can Do:

  • Build Your Knowledge:

    • Learn about dementia progression so changes don't catch you unprepared

    • Don’t be afraid to ask healthcare providers (doctors, nurses and caregivers) to show you specific care techniques

    • Learn to recognize signs of stress in yourself

    • Understand that some difficult behaviors are part of the disease, not directed at you personally

  • Care for Your Emotions:

    • Acknowledge the range of feelings you experience (love, frustration, grief, guilt)

    • Find at least one person you can speak honestly with about your struggles

    • Consider joining a support group in person or online

    • Recognize that feelings of loss occur throughout the caregiving journey

    • Give yourself permission to feel both love for the person and frustration with the situation

  • Practical Self-Care:

    • Identify small breaks you can take throughout day (during naps, quiet activities)

    • Create a list of simple tasks others could help with when they offer

    • Schedule regular longer breaks with help from family or community

    • Establish a quick stress-relief practice you can use anytime (deep breathing, stepping outside)

    • Attend to your own health needs (medical appointments, proper meals, some exercise)

  • Family Considerations:

    • Discuss care responsibilities across extended family networks

    • Consider how traditional family roles might be adapted for shared caregiving

    • Address challenges when family members work far from home

    • Include younger family members in age-appropriate care activities

    • Connect with church or community organizations for additional support

From Research to Your Home: South African research found that caregivers who received education about dementia and participated in even brief support activities experienced 40% less depression and anxiety, regardless of their loved one's condition severity.

Local Resources for South African Families

  • Organizations:

    • Dementia SA: 0860 636 679 or www.dementiasa.org. They offer a weekly virtual support groups take place every Thursday at 1pm. Email them at info@dementiasa.org to join.

    • Alzheimer's South Africa: 011 792 2511 or www.alzheimers.org.za. The offer support groups, training, and updates from across the field of dementia and the work of the Association for Dementia and Alzheimer’s of South Africa NPC (ADASA).

    • SADAG Mental Health Line: 011 234 4837 or www.sadag.org

  • Government Support:

    • Department of Social Development: 0800 428 428

    • Older Persons Grant information: SASSA offices or 0800 60 10 11

    • Disability Grant (for early-onset dementia): SASSA offices

  • Mobile Apps That Help:

    • MindMate (Brain games and activities)

    • Dementia Diary (South African-developed care coordination app)

  • Affordable Care Support:

    • Ask at your clinic about home-based care workers

    • Inquire at local churches and mosques about volunteer visitor programs

This guide was developed based on current research in dementia care, with particular attention to South African contexts and resources. While it provides general guidance, each person with dementia is unique. Trust your knowledge of your loved one as you apply these suggestions.

Reach out to us on 082 464 1421 or community@jamiilife.com.