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Chapter 12: Daily Living and Caregiving Skills

Introduction

Caring for someone with dementia involves providing assistance with everyday activities while preserving their dignity, independence, and quality of life. This chapter focuses on the practical skills caregivers need to support a person with dementia through Activities of Daily Living (ADLs)—the fundamental tasks of self-care that most of us take for granted.

As dementia progresses, individuals gradually lose the ability to perform these tasks independently. However, with the right approach, caregivers can:

  • Maximize remaining abilities: Support independence rather than taking over completely
  • Preserve dignity: Respect privacy and maintain self-esteem
  • Reduce anxiety: Use calm, predictable routines
  • Ensure safety: Prevent injuries during care activities
  • Promote comfort: Address physical needs and preferences

Core Principle: The goal is not simply to complete tasks efficiently, but to provide care that honors the person's humanity, preserves their sense of self, and maintains their quality of life.

This chapter provides step-by-step guidance for supporting ADLs, establishing routines, managing nutrition and hydration, and implementing comfort measures—all while keeping dignity preservation at the forefront of care.

Understanding Activities of Daily Living (ADLs)

What are ADLs?

Activities of Daily Living are the basic self-care tasks essential for independent living. They are divided into two categories:

Basic ADLs (BADLs): - Personal hygiene - Bathing/showering - Dressing - Eating/feeding - Toileting - Mobility and transfers

Instrumental ADLs (IADLs): - Meal preparation - Housework - Managing medications - Managing finances - Shopping - Using transportation - Using telephone

In Dementia: IADLs are typically affected first, often in early stages. As dementia progresses, basic ADLs become increasingly difficult, requiring more caregiver support.

Stages of ADL Decline in Dementia

Early Stage: - IADLs affected: Complex tasks like finances, cooking, medication management - Basic ADLs generally intact: Can still bathe, dress, eat independently - May need reminders and supervision

Middle Stage: - Basic ADLs require assistance: Needs help with bathing, dressing, grooming - May forget steps in familiar tasks - Requires more hands-on support

Late Stage: - Extensive ADL support needed: Total care for all activities - May be immobile or bedbound - Requires complete assistance with eating, toileting, hygiene

Principles of ADL Support

1. Assess Remaining Abilities

Before providing help, determine what the person can still do: - Can they wash their face independently? - Can they put on a shirt if you hand it to them? - Can they feed themselves with adapted utensils?

2. Use a "Do With, Not For" Approach

  • Provide assistance, not complete care
  • Break tasks into simple steps
  • Allow extra time
  • Prompt and guide rather than taking over

3. Maintain Routines

  • Keep consistent schedule for bathing, meals, bedtime
  • Use same sequence of steps each time
  • Predictability reduces anxiety

4. Ensure Safety

  • Remove hazards (slippery floors, sharp objects)
  • Use adaptive equipment (grab bars, raised toilet seats)
  • Supervise closely during transitions and transfers

5. Preserve Dignity Always

  • Respect privacy (close doors, cover exposed areas)
  • Use calm, respectful communication
  • Maintain eye contact at their level
  • Honor preferences when possible
  • Avoid infantilizing language ("Good girl!" "Let's go potty")

Personal Hygiene

Personal hygiene includes hand washing, face washing, oral care, and grooming. Maintaining hygiene supports health, comfort, and dignity.

Challenges in Dementia

  • Forgetting: May forget how to wash or why it's necessary
  • Sequencing: Can't remember the steps involved
  • Sensory issues: Water temperature may feel uncomfortable
  • Resistance: May refuse care due to confusion or loss of privacy

Hand Washing

Why It's Important: Prevents illness, maintains hygiene, promotes comfort

How to Assist:

  1. Lead by example: Wash your hands while person watches
  2. Use verbal cues: "Let's wash our hands together"
  3. Demonstrate each step:
  4. Turn on water (check temperature first)
  5. "Put your hands under the water"
  6. "Pick up the soap"
  7. "Rub your hands together"
  8. "Rinse the soap off"
  9. "Dry your hands"
  10. Hand-over-hand guidance: Place your hands gently over theirs to guide motions
  11. Make it routine: Before meals, after toileting, at regular times

Adaptations: - Use liquid soap (easier than bar soap) - Install lever faucets (easier to operate) - Use single-temperature faucets to prevent burns - Pre-moisten washcloth if sink is overwhelming

Face Washing

Morning and Evening Routine:

  1. Prepare supplies: Warm water in basin, soft washcloth, towel
  2. Explain: "Let's wash your face"
  3. Check water temperature: Always test first
  4. Offer washcloth: See if person can wash own face
  5. Provide assistance as needed:
  6. Gently wash forehead, cheeks, nose, chin
  7. Pat dry (don't rub)
  8. Apply moisturizer if skin is dry
  9. Respect preferences: Some prefer cool water, others warm

Tips: - Use unscented products if person is sensitive to smells - Avoid getting water in eyes - Be gentle around sensitive areas - Talk through each step to reduce anxiety

Bathing Assistance

Bathing is often the most challenging ADL for both people with dementia and their caregivers. It involves privacy concerns, safety risks, and sensory discomfort.

Why Bathing is Difficult

  • Fear: Fear of falling, drowning, or the unknown
  • Cold: Feeling exposed and cold
  • Loss of privacy: Embarrassment at being naked in front of others
  • Sensory overload: Water sounds, temperature changes
  • Confusion: Doesn't understand what's happening
  • Pain: Arthritis or other conditions make movement painful

Frequency of Bathing

Reality: Daily baths are not necessary and may cause distress.

Recommendations: - Full bath/shower: 2-3 times per week - Daily: Wash face, hands, underarms, genitals (using washcloth) - After incontinence: Clean and dry skin thoroughly

Prioritize comfort and dignity over frequency.

Preparing for Bath Time

Environment: - Warm the bathroom beforehand (space heater if needed) - Reduce noise (turn off fans if loud) - Ensure good lighting - Have everything ready before starting - Remove hazards (throw rugs, cords)

Supplies Needed: - Non-slip bath mat (inside and outside tub/shower) - Shower chair or bath bench - Handheld showerhead (easier to control) - Mild, unscented soap - Soft washcloths (several) - Large, warm towels - Clean clothes laid out - Any adaptive equipment (grab bars, raised toilet seat)

Timing: - Choose time when person is most calm and rested - Avoid rushing - Don't force if highly resistant—try again later - Use familiar routine

Step-by-Step Bathing Process

1. Approach Calmly

  • Choose words carefully: "Let's get cleaned up" rather than "It's time for your bath"
  • Be matter-of-fact, not apologetic
  • If resistance, try distraction: "After we clean up, we can have tea"

2. Maintain Privacy and Warmth

  • Keep person covered as much as possible
  • Only expose one area at a time
  • Use towels to cover non-washing areas
  • Start with least invasive areas (hands, arms)

3. Washing Sequence

Preferred method: From least to most private

  1. Face and neck (without soap)
  2. Arms and hands
  3. Chest and abdomen (keep covered with towel)
  4. Legs and feet
  5. Back
  6. Genital area last (allow person to do this themselves if possible)

4. Hair Washing

  • Can be done separately on a different day
  • Use "no-rinse" shampoo if water is distressing
  • Lean person back in shower chair or at sink
  • Use handheld showerhead to wet and rinse
  • Towel dry hair immediately to prevent chilling

5. Drying

  • Pat dry thoroughly (don't rub)
  • Pay special attention to skin folds (under breasts, between toes, groin)
  • Apply lotion to prevent dry skin
  • Dress immediately to maintain warmth

Safety During Bathing

Fall Prevention: - Never leave person alone in bath/shower - Use non-slip mats - Install grab bars (securely mounted in studs, not drywall) - Use shower chair or bath bench - Transfer in and out safely (see Transfer Techniques section)

Burn Prevention: - Check water temperature with elbow or thermometer (90-105°F/32-40°C) - Set water heater no higher than 120°F (49°C) - Turn on cold water first, add hot gradually - Use single-lever faucets if possible

Drowning Prevention: - Use shallow bath water (4-6 inches) - Never leave person alone - Avoid bubble bath (slippery, may cause UTI)

Alternatives to Traditional Bathing

Bed Bath:

For those who cannot get to bathroom:

  1. Fill basin with warm water
  2. Use washcloths and towels
  3. Wash one body part at a time, keeping rest covered
  4. Change water when it cools or gets soapy
  5. Pat dry and apply lotion

No-Rinse Products: - No-rinse shampoo caps: Pre-moistened caps that clean hair without water - No-rinse body wash: Apply, lather, towel off (no rinsing needed) - Pre-moistened bath wipes: For quick clean-up

Managing Resistance

If person resists bathing:

Don't: - Force or argue - Scold or shame - Rush - Give up and never bathe them

Do: - Stay calm - Try again later (or different day) - Use distraction and reassurance - Try different approach (shower vs. bath, morning vs. evening) - Have different caregiver try - Break task into smaller steps (face and hands today, rest tomorrow) - Use music or singing - Consider professional home health aide

Validation approach: "I can see you're upset. We don't have to do this right now. How about we have some tea first?"

Dressing Assistance

Dressing independently is important for self-esteem and dignity. As dementia progresses, dressing becomes challenging, but strategies can maintain involvement.

Challenges

  • Sequencing: Forgets order of clothing (underwear before pants)
  • Motor skills: Buttons, zippers, snaps become difficult
  • Appropriateness: May choose seasonal inappropriate clothing
  • Matching: May not match colors or patterns
  • Modesty: May undress in public or refuse to dress

General Principles

1. Simplify Choices

  • Limit options: Offer 2 outfits, not entire closet
  • Remove inappropriate or out-of-season clothes from closet
  • Lay out clothes in order to be put on

2. Simplify Clothing

  • Choose elastic waists over buttons/zippers
  • Use Velcro instead of laces
  • Front-opening rather than over-the-head
  • Slip-on shoes rather than tie shoes
  • Avoid small buttons, complicated fasteners

3. Maintain Preferences

  • Honor lifelong preferences (always wore dresses, never wore jeans)
  • Favorite colors and styles
  • Comfortable fabrics (avoid scratchy materials)

4. Safety Considerations

  • Non-slip socks or shoes
  • Proper fit (not too loose or tight)
  • Remove dangerous items (belts that could strangle, scarves)

Step-by-Step Dressing Process

Lay Out Clothes in Order:

Top to bottom: 1. Underwear (top layer) 2. Undershirt or bra 3. Shirt 4. Pants 5. Socks 6. Shoes (on floor)

Verbal Cues with Each Item:

  • Hand person item: "Here's your shirt"
  • One instruction at a time: "Put your arm in the sleeve"
  • If confused, demonstrate on yourself
  • Allow time to process each step

Provide Hand-Over-Hand Assistance as Needed:

  • Guide arms into sleeves
  • Help pull pants up (person can stand briefly if able)
  • Help with fastenings

Sequence:

Upper Body: 1. Remove nightwear (top) 2. Put on undershirt or bra 3. Put on shirt 4. If over-the-head: scrunch shirt, stretch opening, guide head through, then arms 5. If button-down: arms in sleeves first, then button (or let person button if able)

Lower Body: 1. Remove nightwear (bottom) 2. Put on underwear: - Sitting on bed or chair - Person steps into leg holes or slide over feet - Stand briefly to pull up (provide support) 3. Put on pants same way 4. Put on socks: Pull all the way up to prevent tripping 5. Put on shoes: Non-slip, proper fit

Tips for Success

Maintain Dignity: - Close door and curtains - Keep person covered during transitions - Use calm, respectful tone - Don't rush - Allow them to do as much as possible

Timing: - Dress after breakfast (or before, depending on routine) - Allow extra time (rushing causes stress) - If resistant, use distraction: "After we get dressed, let's look at photos"

Encourage Independence: - "You start, I'll help if you need it" - Prompt: "What comes next?" - Praise efforts: "You're doing great"

Managing Common Issues

Wants to Wear Same Clothes Every Day: - Buy duplicates of favorite outfit - Wash clothes at night while person sleeps - Pick your battles—cleanliness matters more than variety

Undresses Inappropriately: - Use clothing that's difficult to remove (backwards zippers, one-piece outfits) - Redirect: Offer activity involving hands - Use validation: "I see you're uncomfortable. Let's go somewhere private"

Refuses to Change Clothes: - Wait until after soiling or bathing - Use distraction: "Let's get dressed to go see [person/place]" - Have someone else try - Choose battles—is this worth the fight?

Feeding Strategies

Adequate nutrition and hydration are critical for health. As dementia progresses, eating and drinking require increasing support.

Challenges

  • Forgetting to eat: Doesn't feel hunger or forgets if already ate
  • Doesn't recognize food: Can't identify items on plate
  • Lost skills: Forgets how to use utensils
  • Pocketing: Holds food in cheeks without swallowing
  • Refusing food: Turns head away, clamps mouth shut
  • Eating too fast: Risk of choking
  • Eating non-food items: May try to eat flowers, soap, etc.

Creating Supportive Mealtime Environment

Physical Environment: - Quiet, calm space (turn off TV) - Good lighting - Comfortable seating (proper height, support) - Minimal distractions - Small group or one-on-one

Table Setting: - Simple place setting (reduce clutter) - Plate, bowl, and cup in contrasting color to table (easier to see) - Use red or bright colored dishes (may stimulate appetite) - Non-slip placemat - One course at a time

Adapted Utensils and Dishes

Utensils: - Built-up handles (easier to grip) - Weighted utensils (steadier for tremor) - Angled/curved spoons - Spork (combines spoon and fork)

Dishes: - Scoop dishes (high sides help get food on utensil) - Divided plates (keeps foods separate) - Non-slip base plates - Cups with lids and spouts (prevent spills) - Two-handled cups (easier to grip)

Mealtime Strategies

Before the Meal: - Offer toileting first - Ensure comfortable position - Put on clothing protector (if accepted)—call it "napkin" not "bib" - Offer hand washing

Presenting Food: - Serve food at appropriate temperature (test first) - Cut food into bite-sized pieces - One food item at a time if overwhelmed by full plate - Describe food if person seems confused: "This is chicken" - Finger foods if utensils are difficult (see below)

During the Meal: - Sit at eye level - Eat together (modeling) - Offer small bites - Verbal cues: "Take a bite," "Chew," "Swallow" - Allow adequate time between bites - Check mouth for pocketing - Offer sips of liquid to help swallowing - Watch for signs of choking

Encouraging Independence: - Hand person utensil and guide hand to plate if needed - Prompt: "Pick up your spoon" - Use hand-over-hand technique initially, then fade - Place spoon in hand if person has "forgotten" it's there

Finger Foods

For those who can no longer use utensils:

Breakfast: - Toast strips - Pancake strips - Scrambled egg pieces - Fruit pieces - Cheese cubes

Lunch/Dinner: - Sandwiches (quarters) - Chicken strips - Meatballs - Fish sticks - Cheese cubes - Steamed vegetables (broccoli, carrots) - Pasta pieces

Snacks: - Crackers with cheese - Cookies - Fruit pieces - Cheese sticks

Considerations: - Foods should be soft enough to chew easily - Avoid foods that crumble (choking risk) - Watch for over-stuffing mouth

Managing Eating Difficulties

Refuses to Open Mouth: - Try different food or temperature - Use gentle touch on lips or chin to cue - Model: Open your own mouth - Try small spoon or putting food on finger - Don't force—try again later

Pockets Food: - Check inside cheeks after each bite - Prompt: "Swallow your food" - Offer sip of liquid - Gently massage throat (downward motion) to cue swallow - Smaller bites

Eats Too Fast: - Serve small amounts at a time - Remove plate between bites - Offer one bite at a time from your hand - Verbal pacing: "Chew slowly," "Take your time"

Spits Food Out: - May not like taste or texture - May be too hot or cold - Try different foods - May need pureed consistency

Eats Very Slowly: - May take 45-60 minutes—allow adequate time - Keep food warm (insulated plate, warming tray) - Offer smaller, more frequent meals

Refuses to Eat: - Try different foods, times, settings - Offer favorite foods - Have someone else try feeding - Rule out medical issues (pain, constipation, dental problems) - Contact doctor if refusal continues

Swallowing Difficulties (Dysphagia)

Warning Signs: - Coughing during eating or drinking - Wet, gurgly voice after swallowing - Pocketing food - Taking very long to chew and swallow - Drooling - Weight loss - Recurrent pneumonia

If Suspected: - Consult doctor and speech therapist - Swallow evaluation may be needed - Diet modifications may be required (see below)

Modified Diets (prescribed by speech therapist):

  1. Regular: Normal food and liquids
  2. Soft/Mechanical Soft: Soft textures, no tough meats or raw vegetables
  3. Minced/Ground: Ground meats, soft vegetables
  4. Pureed: Smooth, pudding-like consistency

Thickened Liquids (to prevent aspiration): - Thin (normal) - Nectar-thick - Honey-thick - Pudding-thick (spoon-thick)

Toileting Support

Maintaining toileting independence as long as possible is important for dignity. As dementia progresses, support is needed.

Challenges

  • Forgetting where bathroom is: Can't find it in time
  • Forgetting why they're there: Gets to bathroom but forgets purpose
  • Forgetting steps: Doesn't know what to do
  • Not recognizing urge: Loses sensation of needing to go
  • Incontinence: Loses bladder/bowel control

Promoting Independence

Environmental Modifications: - Clear path to bathroom (remove obstacles) - Night lights for evening trips - Sign on bathroom door (picture of toilet) - Leave bathroom door open (easier to see) - Paint toilet seat different color from floor (easier to see) - Install grab bars - Use raised toilet seat (easier to sit/stand)

Clothing Modifications: - Elastic waists (easy to pull down) - Avoid complex fasteners - Pants in contrasting color to underwear (see difference)

Toileting Schedule

Prompted voiding (scheduled toileting):

  • Take to bathroom every 2-3 hours
  • After meals
  • Before and after sleep
  • Before leaving house
  • Before activities

Even if person says they don't need to go, encourage trying.

Routine: 1. Approach calmly: "Let's take a bathroom break" 2. Lead to bathroom: Take arm gently 3. Provide privacy but stay nearby 4. Verbal cues: "Pull down your pants," "Sit down," "Try to go" 5. Allow adequate time: Don't rush 6. Assist with wiping if needed (front to back for women) 7. Help pull up pants 8. Wash hands together

Managing Incontinence

(See separate Incontinence Management section below for detailed information)

Key Points: - Incontinence is common in later stages - Not a sign of laziness or spite - Medical evaluation needed to rule out treatable causes - Scheduled toileting can reduce accidents - Protective products available

Mobility Assistance and Transfer Techniques

Safe mobility and transfers are critical to prevent falls and injuries for both the person with dementia and the caregiver.

Assessing Mobility Level

Independent: Walks without assistance Supervision: Walks but needs someone nearby for safety Minimal Assistance: Needs hand-hold or touch support Moderate Assistance: Needs significant physical support Dependent: Cannot walk; requires wheelchair or is bedbound

Always assess before attempting transfers.

General Safety Principles

For Person with Dementia: - Non-slip footwear (not socks alone) - Proper-fitting clothing (not too long) - Clear walkways (no cords, throw rugs, clutter) - Good lighting - Grab bars installed in bathroom, hallways

For Caregiver: - Use proper body mechanics (bend knees, not back) - Get close to person (don't reach) - Use gait belt for safety - Get help for heavy transfers - Use mechanical lifts if available

Gait Belts

A gait belt is a sturdy fabric belt worn around person's waist to provide secure handhold during transfers and walking.

How to Use: 1. Thread belt through buckle 2. Place around person's waist (over clothing, not bare skin) 3. Position buckle off-center (not on spine) 4. Tighten so it's snug but comfortable (should fit 2-3 fingers between belt and body) 5. Hold belt with underhand grip from back or side 6. Never use to lift person—use for stability and guidance

Transfer Techniques

Sitting to Standing

1. Sit-to-Stand from Chair:

  1. Person sitting at edge of chair, feet flat on floor
  2. Apply gait belt
  3. Stand directly in front, feet shoulder-width apart
  4. Caregiver places one foot between person's feet, one foot back
  5. Person leans forward ("nose over toes")
  6. Person places hands on armrests
  7. Count: "One, two, three, stand!"
  8. Person pushes up from armrests while caregiver provides support via gait belt and possibly under arms
  9. Once standing, ensure person is stable before walking

Alternative method if person can't push up: - Use standing pivot transfer (see below) - Consider using mechanical lift

2. Standing Pivot Transfer (chair to wheelchair, wheelchair to bed, etc.):

  1. Position wheelchair or receiving surface at 45-degree angle
  2. Lock wheelchair brakes
  3. Remove footrests and armrest (if possible) on transfer side
  4. Assist person to stand (as above)
  5. Person places hands on caregiver's shoulders (or gait belt)
  6. Caregiver holds gait belt
  7. Person pivots (small steps) until backs of knees touch receiving surface
  8. Person sits slowly while caregiver guides and controls descent

3. Bed-to-Chair Transfer:

  1. Raise bed to appropriate height (person's feet touch floor when sitting)
  2. Person sits at edge of bed
  3. Place chair/wheelchair close, at angle
  4. Lock brakes
  5. Apply gait belt
  6. Assist to stand (as above)
  7. Pivot and sit in chair

4. Car Transfer:

  1. Person stands next to open car door, back to seat
  2. Person sits on edge of seat
  3. Pivot body into car
  4. Lift legs into car (one at a time, or both together)
  5. Fasten seatbelt

Getting out: Reverse process

Walking Assistance

With Gait Belt: - Walk slightly behind and to the side - Hold gait belt with one hand, person's arm with other (if needed) - Match person's pace (don't rush) - Provide verbal cues: "Small steps," "Lift your feet"

With Walker or Cane: - Ensure walker/cane is proper height (wrists level when standing upright) - Walker should have rubber tips and be in good condition - Person should look forward, not down - Small steps

Preventing Falls: - Clear walkways - Non-slip surfaces - Adequate lighting - Handrails on both sides of stairs - Rest breaks as needed - Never leave person standing alone

When Person Falls

Don't try to catch or lift during fall—risk of injury to both

After a Fall:

  1. Stay calm
  2. Assess for injury:
  3. Ask if person has pain
  4. Check for bleeding, bruising, deformity
  5. Don't move if suspected fracture
  6. Call 911 if serious injury or can't help person up
  7. If no apparent injury:
  8. Let person rest briefly
  9. Get sturdy chair
  10. Help person roll to side, then to hands and knees
  11. Help to crawl to chair
  12. One leg up (stronger side), place hands on chair
  13. Push up to standing using chair for support
  14. Sit in chair
  15. Monitor: Watch for delayed symptoms (pain, confusion)
  16. Report to doctor

Prevention after fall: - Physical therapy evaluation - Home safety assessment - Review medications - Increase supervision

Sleep Hygiene

Quality sleep is important for both the person with dementia and the caregiver. Sleep disturbances are common in dementia but can be managed.

Common Sleep Problems

  • Difficulty falling asleep
  • Frequent nighttime awakening
  • Wandering at night
  • Day-night reversal (sleeping during day, awake at night)
  • Sundowning (increased confusion and agitation in late afternoon/evening)

Causes

  • Pain or discomfort
  • Need to use bathroom
  • Medication side effects
  • Too much daytime napping
  • Lack of physical activity
  • Disrupted circadian rhythm
  • Sleep apnea
  • Anxiety or fear

Promoting Good Sleep

Sleep Schedule: - Consistent bedtime and wake time (even weekends) - Limit daytime naps (no more than 30 minutes, not after 3 PM) - Wake person if sleeping too much during day

Daytime Activity: - Encourage physical exercise (morning or early afternoon) - Expose to natural light (especially morning) - Provide stimulating activities during day - Avoid strenuous activity in evening

Evening Routine: - Calm, quiet activities - Dim lights as evening progresses - Avoid stimulating TV shows or activities - Light snack (complex carbs—small bowl of oatmeal, toast) - Warm milk or herbal tea (avoid caffeine) - Toileting before bed

Bedtime Routine (same sequence every night): - Personal care (face washing, teeth brushing) - Change into sleepwear - Toileting - Comfortable positioning in bed - Gentle music or white noise - Night light (not too bright) - Reassuring words: "Good night, I'll see you in the morning. I'm right down the hall."

Bedroom Environment: - Comfortable temperature (cooler better than warmer) - Dark (blackout curtains if needed) - Quiet (white noise machine if environmental noise) - Comfortable mattress and pillows - Safe (no tripping hazards, clear path to bathroom)

Safety at Night: - Night lights along path to bathroom - Bed alarm or motion sensor if person wanders - Baby monitor to hear if person gets up - Remove clutter - Lock doors/windows if wandering risk

Managing Nighttime Waking

If Person Wakes and Calls Out: - Go to them calmly - Speak softly and reassuringly - Assess: "What do you need?" - Address need (bathroom, pain, repositioning) - Use calm, gentle redirection back to sleep - Avoid turning on bright lights - Avoid engaging in stimulating conversation - Stay briefly, then encourage sleep

If Person Wanders: - Ensure safety (locks on exterior doors, alarms) - Guide back to bed calmly - Offer toilet, water, reassurance - Return to bed - May need to let person walk briefly to expend energy

Avoid: - Arguing or reasoning ("It's nighttime, you need to sleep") - Turning on bright lights - Stimulating activities - Large meals or drinks (need to urinate) - Scolding

Daily Routines

Establishing and maintaining consistent daily routines reduces anxiety, promotes independence, and provides structure and predictability.

Why Routines Matter in Dementia

  • Reduces confusion: Predictability provides security
  • Supports remaining abilities: Familiar patterns are easier to follow
  • Decreases challenging behaviors: Less anxiety and uncertainty
  • Provides rhythm: Natural flow to the day
  • Easier for caregivers: Less resistance and negotiation

Creating a Daily Routine

Morning: - Wake at same time - Toileting - Personal hygiene (face, teeth) - Dressing - Breakfast - Light activity or exercise - Medication

Midday: - Activity (craft, music, walk) - Lunch - Quiet time or short rest - Activity (social, cognitive stimulation) - Snack

Afternoon: - Activity (avoid strenuous as day progresses) - Early dinner (5-6 PM) - Medication - Calm activity (puzzles, photos)

Evening: - Personal hygiene - Change into sleepwear - Toileting - Calming activity (music, TV) - Bedtime routine (same time each night)

Key Principles:

  1. Consistency: Same activities at same times
  2. Flexibility: Allow for bad days, medical appointments
  3. Individualized: Based on person's preferences and abilities
  4. Balanced: Mix active/passive, social/solitary, indoor/outdoor
  5. Meaningful: Include activities person enjoys and can succeed at
  6. Paced: Build in rest periods, don't overschedule

Tips for Successful Routines

Visual Schedule: - Create picture schedule showing day's activities - Cross off or move indicator as day progresses - Helps with orientation and reduces repeated questioning

Transitions: - Give advance warning: "In 10 minutes, we'll have lunch" - Use consistent phrases: "Time for breakfast" every morning - Allow time between activities (no rushing)

When Routine is Disrupted: - Return to routine as soon as possible - Provide extra reassurance - May see increased confusion or agitation—be patient

Meal Planning, Nutrition, and Hydration Management

Adequate nutrition and hydration are fundamental to health and well-being. Dementia affects eating and drinking in multiple ways.

Nutritional Needs

General Guidelines: - Calories: May need 1,800-2,400/day depending on activity level - Protein: Important for maintaining muscle mass - Fiber: Prevents constipation - Calcium and Vitamin D: Bone health - Fluids: 6-8 cups per day minimum

In Later Stages: - Calorie needs may increase (wandering, restlessness) - Weight loss common—may need calorie-dense foods - Supplements may be needed (discuss with doctor)

Meal Planning Strategies

Plan Simple, Nutritious Meals: - Focus on whole foods (fruits, vegetables, whole grains, lean protein) - Include favorite foods - Consistent meal times - Three meals plus 2-3 snacks

Make Meals Appealing: - Colorful presentation - Variety of textures - Familiar foods - Appropriate portion sizes (not overwhelming)

Foods to Emphasize: - Soft, moist foods (easier to chew and swallow) - High-protein: eggs, fish, poultry, beans, dairy - Fruits and vegetables: varied colors and types - Whole grains: oatmeal, brown rice, whole wheat bread - Healthy fats: olive oil, nuts, avocados, fatty fish

Foods to Limit: - Hard, dry, crumbly foods (choking risk) - Tough meats - Processed foods high in sodium - Sugary foods (empty calories) - Caffeine (late in day)

Addressing Poor Appetite

Causes: - Medications - Depression - Constipation - Dental problems - Decreased taste/smell - Fatigue

Strategies: - Offer small, frequent meals (5-6 per day) - Include favorite foods - Enhance flavors with herbs and spices - Offer nutritious snacks - Make meals social - Ensure adequate physical activity (stimulates appetite) - Address underlying causes (dental care, constipation management)

Hydration Management

Why Hydration is Critical: - Prevents UTIs - Prevents constipation - Supports cognitive function - Maintains skin integrity - Regulates body temperature

Signs of Dehydration: - Dark urine - Decreased urination - Dry mouth and lips - Sunken eyes - Confusion (worse than baseline) - Dizziness - Rapid heart rate

Encouraging Fluid Intake

Goal: 6-8 cups (48-64 ounces) per day

Strategies: - Offer fluids frequently (every 1-2 hours) - Provide variety: water, juice, milk, herbal tea, broth - Use see-through cups (can see liquid level) - Use cups with lids and straws (easier, less spilling) - Offer small amounts throughout day - Include high-water foods: watermelon, cucumbers, soup, smoothies, popsicles, gelatin - Keep water within reach (but monitor—may spill) - Model: Drink together - Flavor water with fruit slices if person finds it boring

Avoid: - Excessive caffeine (diuretic) - Alcohol (dehydrating) - Large amounts at once (overwhelming, increases toileting frequency)

Monitor: - Track fluid intake (use chart) - Note urine color and frequency - Watch for signs of dehydration - Contact doctor if concerns

Dental Care

Oral health affects nutrition, comfort, overall health, and dignity. Dementia makes dental care challenging, but it's essential.

Why Dental Care Matters

  • Prevents pain: Tooth decay, gum disease cause discomfort
  • Supports nutrition: Painful teeth make eating difficult
  • Prevents infection: Oral bacteria can lead to serious infections
  • Maintains dignity: Clean mouth feels good, reduces bad breath
  • Prevents tooth loss: Preserves ability to eat solid foods

Daily Oral Hygiene Routine

Tooth Brushing (2x daily: morning and bedtime):

Supplies: - Soft-bristled toothbrush (or electric toothbrush) - Fluoride toothpaste - Cup of water - Towel

Steps: 1. Have person sit or stand at sink 2. Demonstrate brushing on yourself 3. Put pea-sized amount of toothpaste on brush 4. Hand brush to person: "Brush your teeth" 5. If person can do it: - Supervise and prompt as needed - May need verbal cues for each step 6. If person needs assistance: - Stand beside and slightly behind - Gently guide hand holding brush - Brush all surfaces: front, back, chewing surfaces - Gentle circular motions - Brush tongue 7. Rinse: "Spit into the sink" 8. Wipe mouth with towel

Tips: - Use child-friendly toothpaste (less irritating if swallowed) - Sing or play music during brushing - Break task into small steps - If resistance, try different times, or offer break and try again

For Those Who Resist: - Try flavored toothpaste - Use finger brush or gauze-wrapped finger - Use toothbrush dipped in mouthwash or water (without toothpaste) - Brush after meals when mouth is already open - Have someone else try

Denture Care

If Person Has Dentures:

Daily Cleaning: 1. Remove dentures after meals 2. Rinse under running water 3. Brush with denture brush and denture cleaner (not regular toothpaste—too abrasive) 4. Rinse thoroughly 5. Soak overnight in denture solution 6. Rinse before reinserting in morning

Fit Check: - Dentures should fit snugly without adhesive - Loose dentures cause sores - Poor fit makes eating difficult - See dentist for adjustments

Oral Care Even with Dentures: - Brush gums, tongue, palate with soft toothbrush - Rinse mouth after meals

Professional Dental Care

Regular Dental Visits: - Every 6 months (or as recommended by dentist) - Find dementia-friendly dentist - Bring list of medications - Provide dentist with information about dementia stage and communication strategies

What to Watch For: - Refusing food (may indicate dental pain) - Holding hand to mouth - Changes in eating patterns - Bad breath - Swollen, red gums - Loose teeth - Facial swelling

Emergency: If signs of dental abscess (severe pain, swelling, fever), seek immediate care.

Grooming

Grooming includes hair care, nail care, and shaving. Good grooming supports dignity and self-esteem.

Hair Care

Hair Brushing/Combing (daily): - Use soft brush - Offer to person first: "Would you like to brush your hair?" - If person can do it, supervise and assist as needed - If you must do it: - Brush gently - Start at ends, work up to roots (prevents pulling) - Support head gently - Be careful around sensitive areas

Hair Washing (as needed, typically at bath time): - See Bathing section for details - Can use dry shampoo between washes - Keep style simple and easy to maintain

Haircuts: - Keep style simple (low-maintenance) - Home visit from hairdresser (less disruptive than salon) - Or find dementia-friendly salon - Familiar stylist preferred

Nail Care

Fingernail Care: - Trim weekly or as needed - Soak hands in warm water first (softens nails) - Cut straight across (prevents ingrown nails) - File smooth - Apply lotion - Check for redness, swelling, ingrown nails

Toenail Care: - More difficult—may need podiatrist - Inspect feet regularly - Wash and dry thoroughly (especially between toes) - Trim toenails straight across - Never cut into corners (risk of ingrown nails) - Apply lotion (not between toes)

When to See Podiatrist: - Thick, difficult-to-cut nails - Diabetes (foot care very important) - Ingrown toenails - Corns, calluses, bunions

Shaving

For Men:

Electric Razor (safest): - Simpler and safer than blade - Person may be able to use independently with supervision - Clean razor regularly

Safety Razor: - Only if person can cooperate - Use shaving cream - Caregiver may need to do this - Careful around nose, ears, chin

Tips: - Shave after bath (skin softer) - Use mirror (helps with awareness) - Maintain familiar routine

For Women:

Facial Hair: - Tweezers for occasional hairs - Professional waxing - Depilatory cream (test for sensitivity)

Leg/Underarm Shaving: - Electric razor safest - Only if person comfortable with it - May not be necessary (choose your battles)

Incontinence Management

Urinary and bowel incontinence are common in later stages of dementia. While distressing, they can be managed with dignity and compassion.

Types of Incontinence

Urinary Incontinence: - Urge incontinence: Sudden strong urge, can't reach bathroom in time - Functional incontinence: Can't get to bathroom or manage clothing fast enough - Overflow incontinence: Bladder doesn't empty completely - Total incontinence: Complete loss of bladder control

Bowel Incontinence: - Less common than urinary - Usually occurs in later stages

Causes

Dementia-Related: - Forgets where bathroom is - Doesn't recognize urge to go - Forgets what to do in bathroom - Can't manage clothing quickly enough

Medical (treatable): - Urinary tract infection (UTI) - Constipation (can cause urinary incontinence) - Medications (diuretics) - Diabetes - Prostate problems (men)

Always rule out treatable causes before assuming it's dementia-related.

Prevention Strategies

Scheduled Toileting (see Toileting section): - Take to bathroom every 2-3 hours - Before and after meals - Before leaving house - Before bed and upon waking - Even if person says they don't need to go

Environmental Modifications: - Clear path to bathroom - Sign on door - Night lights - Grab bars, raised toilet seat - Easy-to-remove clothing

Fluid Management: - Adequate fluids during day (don't restrict—worsens problems) - Limit fluids 2 hours before bedtime - Avoid caffeine (bladder irritant)

Bowel Routine: - High-fiber diet - Adequate fluids - Regular physical activity - Scheduled time after meals (gastrocolic reflex) - Stool softener if needed (per doctor)

When Accidents Happen

React Calmly: - Don't scold, shame, or express disgust - Stay matter-of-fact: "Let's get you cleaned up" - Reassure: "It's okay, these things happen"

Clean-Up Process:

Urinary: 1. Help person to bathroom or bedroom 2. Remove wet clothing 3. Clean genital area thoroughly with disposable wipes (front to back for women) 4. Pat dry 5. Apply barrier cream if skin irritated 6. Help into clean, dry clothing 7. Wash hands

Bowel: 1. Remove soiled clothing carefully 2. Place in plastic bag 3. Clean genital and perianal area thoroughly with wipes 4. Pat dry 5. Apply barrier cream 6. Help into clean clothing 7. Wash hands thoroughly

Laundry: - Rinse soiled items in cold water - Use enzymatic cleaner - Wash separately in hot water with detergent - May need to wash twice - Dry thoroughly

Protective Products

Types Available:

Absorbent Underwear ("pull-ups"): - Look like regular underwear - For light to moderate incontinence - Person can pull up and down like regular underwear - More dignity-preserving

Adult Diapers (briefs with tabs): - For moderate to heavy incontinence - Easier to change for bedridden or immobile persons - Require lying down to change

Pads/Liners: - For very light incontinence - Wear inside regular underwear - Disposable or reusable

Sizing: Critical for preventing leaks—measure and follow size chart

When to Change: - Check every 2-3 hours - Change immediately after bowel movement - Change when wet (prolonged contact causes skin breakdown) - Before bed, immediately upon waking

Disposal: - Wrap in plastic bag - Dispose in covered trash can (empty daily)

Skin Care with Incontinence

Preventing Breakdown: - Change products promptly - Clean and dry skin thoroughly after each change - Apply barrier cream (zinc oxide, petroleum jelly) - Expose skin to air when possible - Use gentle, fragrance-free products

Signs of Skin Problems: - Redness - Rash - Painful, open areas - Odor

If skin breakdown occurs: Consult doctor or wound care nurse

Managing Caregiver Feelings

Incontinence care is one of the hardest aspects of caregiving. Feelings of disgust, sadness, frustration are normal.

Remember: - Person cannot control this - Person is likely embarrassed and upset too - This is a symptom of disease, not behavioral - You're providing compassionate care - It's okay to take breaks and ask for help - Consider home health aide for assistance

Skin Care

Healthy skin is essential for comfort and preventing serious complications. People with dementia are at risk for skin problems.

Risks

  • Immobility
  • Incontinence
  • Poor nutrition/hydration
  • Aging skin (fragile, dry)
  • Decreased sensation (may not feel discomfort)

Daily Skin Care

Inspection (daily): - Check entire body during bathing or dressing - Look for redness, rashes, pressure areas, bruising, wounds - Pay special attention to: - Bony prominences (heels, sacrum, hips, elbows, back of head) - Skin folds (under breasts, groin, between toes) - Areas exposed to moisture (incontinence)

Cleansing: - Daily bathing or sponge bath - Use mild, non-soap cleanser - Pat dry thoroughly (don't rub) - Dry skin folds completely

Moisturizing: - Apply lotion daily (after bathing while skin slightly damp) - Use fragrance-free, hypoallergenic products - Focus on dry areas (elbows, heels, hands) - Don't apply between toes (can cause fungal infection)

Pressure Injury Prevention

Pressure injuries (also called bedsores, pressure ulcers, decubitus ulcers) are damage to skin and underlying tissue from prolonged pressure.

Most Common Sites: - Sacrum (tailbone) - Heels - Hips - Elbows - Back of head - Shoulder blades - Spine

Risk Factors: - Immobility - Bedbound or wheelchair-bound - Poor nutrition - Incontinence - Thin or fragile skin - Decreased sensation

Prevention (see Positioning section below for details): - Frequent position changes (every 2 hours if bedbound) - Pressure-relieving cushions and mattresses - Keep skin clean and dry - Adequate nutrition and hydration - Inspect skin daily - Avoid friction and shearing during transfers

Stages:

  • Stage 1: Non-blanchable redness (doesn't turn white when pressed)
  • Stage 2: Partial-thickness skin loss (looks like blister or shallow crater)
  • Stage 3: Full-thickness skin loss (crater, may see fat)
  • Stage 4: Full-thickness tissue loss (deep crater, may see muscle, bone)

If pressure injury develops: Contact doctor immediately. Early treatment prevents worsening.

Skin Tears and Bruising

Prevention: - Handle gently - Avoid bumping into furniture - Remove jewelry that could scratch - Trim fingernails - Use long sleeves if person scratches self - Pad bed rails or wheelchair arms

If Skin Tear Occurs: - Clean gently with saline or water - Pat dry - Apply non-adherent dressing - Seek medical care for large tears or if signs of infection

Positioning

Proper positioning is critical for comfort, preventing complications, and supporting function.

For Bedbound Individuals

Turning and Repositioning (every 2 hours):

Why It's Important: - Prevents pressure injuries - Prevents pneumonia (promotes lung expansion) - Improves circulation - Provides comfort - Reduces contractures (joint stiffness)

Positions:

Supine (on back): - Head elevated 30-45 degrees (prevents aspiration) - Small pillow under knees - Pillows supporting arms - Heels elevated off bed (pillow under calves, not under knees)

Side-Lying (on side): - Pillow under head - Top leg bent, supported on pillow - Pillow between knees - Top arm supported on pillow - Back supported with rolled towel or pillow (30-degree angle, not 90)

Fowler's Position (sitting up in bed): - Head elevated 45-60 degrees - Knees slightly bent - Pillows supporting arms - Used for meals, activities

Rotate positions: Back → right side → back → left side

Special Equipment: - Pressure-relieving mattress: Foam, air, or alternating pressure - Heel protectors: Boots or cushions - Positioning wedges: Support proper alignment - Bed cradle: Keeps blankets off feet

For Wheelchair Users

Proper Positioning: - Feet flat on footrests (adjust height) - Hips all the way back in chair - Knees at 90 degrees - Back supported - Arms supported on armrests

Pressure Relief: - Shift weight every 15-30 minutes (or assist person to shift) - Use pressure-relieving cushion - Stand or transfer every 2 hours

Proper Fit: - Chair should fit person properly - Too wide: person slides to side - Too narrow: rubs hips - Occupational therapist can assess fit

Preventing Contractures

Contractures are permanent tightening of muscles, tendons, and joints, causing deformity and loss of motion.

Prevention: - Frequent position changes - Range of motion exercises (see below) - Proper positioning (avoid prolonged flexion) - Splints or braces if ordered by therapist

Range of Motion (ROM) Exercises:

Gently move each joint through its full range of motion: - Shoulders: Raise arms overhead, out to sides, across body - Elbows: Bend and straighten - Wrists: Bend up, down, side to side, rotate - Fingers: Open and close, spread apart - Hips: Bend knee to chest, out to side, rotate - Knees: Bend and straighten - Ankles: Point toes up, down, circles

How Often: 2-3 times daily (during dressing, bathing)

Tips: - Move slowly and gently - Support joints - Stop if person has pain - Physical therapist can teach proper technique

Comfort Measures

Ensuring physical and emotional comfort is a priority in dementia care, especially in later stages.

Assessing Comfort

People with advanced dementia may not be able to tell you they're uncomfortable. Watch for:

Signs of Discomfort: - Grimacing, frowning - Moaning, crying - Restlessness, agitation - Guarding (protecting) body part - Increased confusion - Refusal to eat - Sleep disturbances - Combativeness during care

Common Causes of Discomfort: - Pain - Constipation - Urinary retention - Hunger or thirst - Too hot or cold - Uncomfortable position - Need to toilet - Wet or soiled clothing - Itching - Loneliness, boredom

Pain Management

Assessing Pain in Those Who Can't Communicate:

Use observation and pain scales designed for dementia: - Facial expressions - Vocalizations - Body language - Changes in behavior - Changes in activity patterns

Pain Relief Strategies:

Non-Pharmacological: - Positioning for comfort - Heat or cold packs (check temperature) - Gentle massage - Relaxation techniques (music, gentle touch) - Distraction

Pharmacological: - Acetaminophen (Tylenol) for mild pain - Stronger pain medications as prescribed - Give regularly if pain is chronic (don't wait for pain to worsen) - Report uncontrolled pain to doctor

Temperature Comfort

Monitor: - Person may not be able to say if too hot or cold - Check temperature by touching skin - Adjust layers of clothing - Adjust room temperature

Prevention: - Dress in layers - Provide blankets - Ensure room temperature is comfortable (68-72°F) - Watch for overheating (flushed, sweating) - Watch for cold (pale, shivering)

Sensory Comfort

Lighting: - Adequate natural light during day - Dim lights in evening - Night lights for safety - Avoid glare

Sound: - Reduce loud, jarring noises - Soft music - Calm voice tones - Minimize background TV noise

Touch: - Gentle, reassuring touch - Hold hand - Gentle massage - Soft fabrics - Avoid rough handling

Emotional Comfort

Reassurance: - Calm, soothing voice - Familiar people nearby - Favorite objects - Photos of loved ones - Meaningful activities

Reducing Anxiety: - Predictable routines - Calm environment - Adequate rest - Addressing physical needs - Presence of loved ones

End-of-Life Comfort

In very late stages, focus shifts entirely to comfort:

  • Manage pain and symptoms
  • Keep person clean and comfortable
  • Position for comfort
  • Provide mouth care
  • Offer small sips of water if able
  • Gentle touch, hand-holding
  • Soft music
  • Presence of loved ones
  • Spiritual support as desired

Palliative Care or Hospice Care may be appropriate—discuss with doctor.

Dignity Preservation

Throughout all care activities, maintaining dignity is paramount. Dementia does not diminish a person's inherent worth and humanity.

What is Dignity in Dementia Care?

Dignity means: - Respecting the person as a unique individual - Honoring their personhood beyond the disease - Preserving privacy and modesty - Supporting autonomy and choice - Communicating respectfully - Maintaining their appearance and hygiene - Creating an environment that values them

Principles of Dignity Preservation

1. Person-Centered Care

Focus on the person, not the disease: - Learn about their life history - Honor lifelong preferences and values - Recognize individuality - See abilities, not just disabilities - Treat as an adult, not a child

2. Respect Privacy

  • Close doors and curtains during personal care
  • Only expose necessary body parts
  • Knock before entering
  • Explain what you're doing
  • Allow private time

3. Support Autonomy

  • Offer choices (even small ones)
  • Encourage participation in care
  • Ask permission: "May I help you with your shirt?"
  • Don't take over unnecessarily
  • Support decision-making to extent possible

4. Communicate Respectfully

  • Use adult language (not baby talk)
  • Don't talk about person as if they're not there
  • Make eye contact
  • Use respectful tone
  • Address by preferred name (not "honey," "sweetie")
  • Speak to them, not about them in their presence

5. Maintain Appearance

  • Keep clean and well-groomed
  • Dress in real clothes (not just pajamas)
  • Style hair
  • Respect personal style preferences
  • Use own clothing (not generic institutional)

6. Honor Personal Space

  • Ask before touching
  • Approach from front (not startling from behind)
  • Respect belongings
  • Allow personal items in environment
  • Don't rearrange without asking

7. Create Positive Environment

  • Treat person as valued, important
  • Include in conversations
  • Avoid correcting or arguing
  • Focus on strengths
  • Celebrate small successes
  • Create opportunities for contribution

Practical Applications

During Bathing: - ✓ Close door, provide privacy - ✓ Keep person covered with towels - ✓ Explain what you're doing - ✓ Allow them to wash private areas if able - ✓ Speak calmly and respectfully - ✗ Leave person exposed - ✗ Rush through process - ✗ Discuss personal matters loudly

During Meals: - ✓ Attractive table setting - ✓ Use real dishes (not Styrofoam) - ✓ Offer choices - ✓ Allow self-feeding as long as possible - ✓ Eat together when possible - ✗ Stand over person hovering - ✗ Wipe face unnecessarily - ✗ Feed like a baby

During Incontinence Care: - ✓ Stay calm and matter-of-fact - ✓ Provide privacy - ✓ Use neutral language: "Let's get you cleaned up" - ✓ Clean thoroughly but gently - ✗ Show disgust - ✗ Scold - ✗ Discuss in front of others

During Activities: - ✓ Offer age-appropriate activities - ✓ Value participation over performance - ✓ Adapt to abilities - ✓ Make activities meaningful - ✗ Use children's toys or activities - ✗ Criticize performance - ✗ Force participation

Language Matters

Use: - "Mrs. Smith" or preferred name - "Would you like help?" - "Let's try..." - "You're doing great"

Avoid: - "Honey," "sweetie," "dear" - "Let me do that" - "No, that's wrong" - "Good girl/boy!" - Baby talk - Elderspeak (high-pitched, sing-song voice)

Family's Role in Dignity Preservation

  • Advocate for respectful treatment
  • Remind staff/caregivers of person's preferences
  • Bring meaningful personal items
  • Maintain connection and relationship
  • Treat with dignity during visits (not talking over them)
  • Support appearance (bring favorite clothes, help with grooming)

Key Takeaways

  1. Activities of Daily Living (ADLs) are the fundamental self-care tasks that become increasingly difficult as dementia progresses, requiring caregiver support while maximizing remaining abilities.

  2. "Do with, not for" is the core principle—provide assistance and guidance rather than taking over completely, preserving independence and dignity.

  3. Consistent routines reduce anxiety, support remaining abilities, and make care easier for both person and caregiver. Same activities at same times in same sequence.

  4. Bathing challenges can be addressed through warm environment, privacy, explaining each step, covering with towels, and using calm reassurance. Daily baths aren't necessary.

  5. Dressing support involves simplifying choices and clothing, laying out clothes in order, providing step-by-step verbal cues, and allowing adequate time.

  6. Feeding strategies include creating calm mealtime environment, using adapted equipment, offering finger foods, and providing verbal cues for each step of eating.

  7. Scheduled toileting every 2-3 hours prevents incontinence accidents and supports dignity. Environmental modifications help wayfinding.

  8. Safe transfers require proper body mechanics, gait belts, clear communication, and assessing mobility level before attempting. Get help when needed.

  9. Sleep hygiene involves consistent schedule, daytime activity, calming evening routine, and comfortable bedroom environment to reduce nighttime waking.

  10. Adequate nutrition and hydration are critical. Offer small, frequent meals; encourage fluids throughout day; monitor for dehydration signs.

  11. Dental care prevents pain and supports nutrition. Daily brushing, regular dental visits, and denture care maintain oral health.

  12. Incontinence management requires scheduled toileting, immediate clean-up, protective products, and excellent skin care to prevent breakdown.

  13. Skin inspection daily identifies problems early. Frequent position changes (every 2 hours if bedbound) prevent pressure injuries.

  14. Comfort assessment requires careful observation in those who can't communicate. Address pain, position, temperature, sensory needs, and emotional comfort.

  15. Dignity preservation must be the foundation of all care activities—respect privacy, support autonomy, communicate respectfully, honor the person beyond the disease.

Review Questions

  1. Define Activities of Daily Living (ADLs) and distinguish between basic ADLs and instrumental ADLs. At what stage of dementia does each category typically become impaired?

  2. What does "do with, not for" mean in the context of dementia caregiving? Provide three specific examples.

  3. Why is bathing often the most challenging ADL? Describe five strategies to make bathing less distressing for a person with dementia.

  4. Explain the proper sequence for dressing assistance. Why is laying clothes out in order important?

  5. What are three adaptations that can support independent eating? Describe the differences between regular, soft, and pureed diets.

  6. Describe the step-by-step process for a safe sit-to-stand transfer using a gait belt. What are three critical safety principles?

  7. What is scheduled toileting and why is it effective? How often should you offer toileting support?

  8. Explain why frequent position changes are critical for bedbound individuals. What are the three main positions and how often should they be rotated?

  9. What is the difference between urge incontinence and functional incontinence? What are five prevention strategies for incontinence in dementia?

  10. Describe five signs that a non-verbal person with dementia may be experiencing discomfort or pain. What are common causes?

  11. Why is adequate hydration particularly important in dementia care? What are signs of dehydration, and what strategies encourage fluid intake?

  12. What does dignity preservation mean in dementia care? Provide five specific examples of how to preserve dignity during personal care activities.

Resources

Caregiver Education and Support

Adaptive Equipment Resources

Professional Services

  • Home Health Agencies: Provide CNAs, home health aides, nurses
  • Area Agency on Aging: Locate at www.eldercare.acl.gov (1-800-677-1116)
  • Adult Day Programs: Respite and activities
  • Hospice/Palliative Care: End-of-life comfort care

Books

  • "The 36-Hour Day" by Nancy L. Mace and Peter V. Rabins - Comprehensive caregiving guide
  • "Learning to Speak Alzheimer's" by Joanne Koenig Coste - Communication and care techniques
  • "Creating Moments of Joy" by Jolene Brackey - Positive caregiving approaches

Videos and Online Training

  • Teepa Snow's Positive Approach to Care: Training videos (www.teepasnow.com)
  • Dementia Care Training: UCLA Alzheimer's and Dementia Care Program
  • Caregiver Action Network: Online support and resources

This chapter provides practical guidance for supporting daily living activities. Individual situations vary—consult healthcare professionals for personalized advice. Respite care and support services are available to help caregivers maintain their own health and well-being.