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Dementia Caregiver Tips: How to Provide the Best Care

Medically Reviewed
Dementia Caregiver Tips: Do's, Don'ts and Must-Knows Caring for a loved one with dementia​ requires plenty of patience and understanding.

Dementia makes everyday living a challenge

Dementia is an umbrella of diseases that cause degenerative changes to the brain, resulting from loss of memory and the ability to perform activities of daily living (ADL) such as dressing, grooming, eating, going to the toilet and bathing.

The condition can also affects one's ability to walk safely and independently, leading to frequent falls and injuries. Persons with dementia also experience behavioural changes, such as unwillingness to perform certain activities, like taking a shower.

Dementia-related behaviours to look out for include:

  • Repetitive behaviours such as asking the same question repeatedly
  • Agitation
  • Tendency to wander
  • Shouting and screaming
  • Hiding, hoarding and losing things
  • Disrupted sleep at nights
  • Sleeplessness and “sun downing”, or increased confusion at dusk continuing into the evening
  • Suspicion
  • Lack of inhibition. For instance, undressing in public or inappropriate sexual behaviour

As dementia progresses, the person's ability to perform ADL also deteriorates. Apart from forgetting routines, the patient may not understand instructions from the caregiver and will require more assistance. The patient may not even remember how to dress or make simple decisions like what to eat and may be overwhelmed by choices or tasks.

During the later stages of dementia, the patient may become incontinent and their eating patterns will be affected.

Adjunct Associate Professor Lim Si Ching, Senior Consultant from the Department of Geriatric Medicine; Li Fuyin, Advance Practice Nurse (Geriatric); and Seng Yuh Jen, Senior Medical Social Worker, all from Changi General Hospital (CGH), a member of the SingHealth group, explains how dementia robs a person's ability to lead a normal life, and shares simple do's and dont's for caregivers.

Do's and don'ts when caring for persons with dementia

 Do

  • Ensure that planned activities are within the person's ability to carry out
  • Break the activity into small parts that are easily achievable
  • At each step, explain what needs to be done in simple language by using easy-to-understand instructions, giving the person enough time to understand and carry out the necessary tasks
  • Use gestures and prompts to orientate them if they seem stuck
  • Keep assisting when needed. Remain calm, pleasant and helpful
  • Thank the person or express appreciation when something is accomplished. Learn to enjoy doing the task, rather than judging the end result

Don't

  • Explain and argue why the activity needs to be done or what will happen if it is not completed
  • Give too many choices or ask confusing or unnecessary questions
  • Rush the patient
  • Point out mistakes or act resentful if the person is slow and clumsy and makes mistakes
  • Do the activity for the person. Instead, do the activity with the person
  • Make the person feel frustrated or tired

Dementia often leads to behaviours that can leave a caregiver feeling stressed, frustrated and helpless. This often occurs when the person with dementia has trouble expressing himself or herself.

For articles on how to manage dementia behaviours, see below.

How to manage anger and agression in dementia patients, click here.

How to manage wandering behaviour in dementia patients, click here. 

How to manage apathy (no interest, low evergy) in dementia patients, click here.

How to manage disinhibited behaviours (lack of restraint) in dementia patients, click here.

How to manage hallucinations in dementia patients, click here.

How to manage paranoia and delusion in dementia patients, click here.

How to manage repetitive behaviours in dementia patients, click here.

How to manage sundown syndrome in dementia patients, click here.

 

How to communicate effectively with persons with dementia

Dementia can affect one's language skills, such that the person with dementia (PWD) has difficulty understanding what was told or asked, cannot find the right words to express himself or recall the names of loved ones.

Such scenarios can be upsetting and frustrating for both the caregiver and the PWD. To better cope with such situations, caregivers should:

  1. Minimise background noise and distractions to help the person with dementia focus.
  2. Use short, simple words and sentences. Speak slowly and clearly.
  3. Put on hearing aid and glasses to facilitate communication.
  4. Avoid questions that require recall from memory.
  5. Use a gentle and relaxed tone — a lower pitch is more calming.
  6. Ask one question at a time and allow time for them to respond. Repeat information
    or questions if needed.
  7. Turn negatives into positives, e.g. say “Let’s go here” rather than “Don’t go there”.
  8. Treat the person with dementia (PWD) with dignity and respect. Avoid addressing the PWD the way you address a child.
  9. Be patient and supportive. Smile often and assist the PWD with clues and hints when there is a language problem.

What to do if the person with dementia is uncooperative?

Try to understand why the person finds it unpleasant and make adaptations if necessary. Re-examine whether the activity really needs to be done or find a simpler way of doing it.

If needed, stop the activity and try again later, or talk to a healthcare professional experienced in caring for people with dementia.

How to plan activities for persons with dementia

Dr Vignesh Sivasamy, Consultant from the Department of Geriatric Medicine at Singapore General Hospital (CGH), shares about the various activities suitable for persons with dementia and easy ways to make a home safer for them.

Everyday activities can be classified into three categories:

  • Self-care
  • Leisure/Rest
  • Work/Productivity

Examples of activities suitable for persons with dementia

CategoryActivities
Self-Care:
Activities of daily living for self-maintenance 
  • Taking Medication
  • Showering
  • Dressing
  • Toileting
  • Putting on makeup
  • Pedicure/manicure
  • Going for a hair cut
  • Brushing teeth
  • Shaving
  • Combing hair
  • Washing face
  • Eating 
Leisure/Rest:
Activities for enjoyment, relaxation, amusement or self expression
Creative

Craft

  • Origami
  • Simple model building
  • Sewing activity
  • Adult coloring book
  • Clay modelling
  • Making paper collage/ card/ bookmark
  • Drawing

Music

  • Playing the piano
  • Singing
Physical & Sensory
  • Outing/walking in communities
  • Gardening
  • Watering plants/Weeding
  • Stretching exercises in sitting
  • Ball/ balloon play
  • Dance/Music and movement
  • Simple taichi
  • Exploring with different senses
    • Vision: drama, photos, pictures, colors, lights etc.
    • Touch: cloth, paper, beans, sands, massage, etc. o smell: perfume, spices, food, essence, flower etc.
    • Listen: music, music instruments, cross talk, bird watching
    • Taste: snack, food, drink etc  
Cognitive

Numeracy related

  • Sudoku (4x4, 6x6, 9x9)
  • Calculations: Multiplication/division sums
  • Calculations: Addition, subtraction sums
  • Number search
  • Poker card activities (e.g. fishing, 21points, sequencing, categorizing, memory games)

Language related

  • Riddles
  • Word formation (coming up with as many words of a certain category, alphabets etc)
  • Cross word puzzles
  • Hangman
  • Scrabble
  • Word search
  • Reading newspapers
  • Copying interesting phrases
  • Copying/practice writing of characters/words

Others/Puzzles

  • Mahjong (Can be playing actual games, sequencing tiles)
  • Rummy
  • Board games eg. Monopoly, Bingo
  • Dominoes
  • Tangrams  
Social
  • Meeting friends at coffee shop
  • Attends religious gatherings
  • Spend time with grandchildren
  • Reminiscence with old photos, pictures, music and objects
Work/Productivity:
Purposeful activities for self-development, social contribution, and livelihood 
Home
management/
IADL related (Instrumental Activities of Daily Living)  
  • Grocery shopping
  • Going out, taking public transport
  • Making small purchases for others/self (buying meals, small items, newspapers)
  • Helping to carry shopping bags

  • Cooking
  • Baking
  • Food/ingredients preparation
  • Make a drink
  • Washing the dishes
  • Setting up for meals

  • Mopping floor, Sweeping floor
  • Cleaning mirrors and sinks
  • Packing of bedside table and own items
  • Bringing out trash
  • Wiping tables

  • Make bed
  • Change pillow case
  • Ironing clothes
  • Hanging and keeping clothes
  • Folding clothes
 Work-like
activities 
  • Typing
  • Assist in administrative tasks (e.g. stamping, tearing of paper stacks)
  • Counting money – eg. counting coins/ sorting coins 

 

How to encourage persons with dementia to do these activites

  • Breakdown steps
  • Provide necessary assistance
  • Provide choices
  • Provide a just-right challenge
  • Focus on the process instead of the result
  • Focus on signs of wellbeing
  • Give positive encouragement, avoid negative comments

Examples of activity difficulty for persons with dementia

 Very EasyEasyModerateDifficult
Work/Productivity
  • Mix batter or food
    (with necessary assistance)
  • Feed self (if able)
  • Food tasting
  • Look through items of significance (photos, objects) together with person with dementia
  • Meal preparation-
    cut/pluck vegetables
  • Assist to set up table/keep plates
    or wash up
  • Sort items
    according to
    colour/sizes (e.g. sort coins etc)
  • Keeping or putting things away
    (stacking, folding etc) 
  • Cook 1 to 2
    familiar/simple
    dishes
  • Caregiver may sit down together with the person with dementia to plan a meal
  • Teach familiar
    dishes to others
  • Make small
    purchases
  • Collecting newspapers cut-outs
  • Copying/ writing tasks
  • Buying lottery etc  
  • Plan & budget for a
    meal
  • Cook for family
  • Writing out own
    recipe
  • Learn a new recipe
  • Grocery shopping
  • Learning to use new technologies
  • Organising own documents/bills etc
Leisure (Cognitive)
  • Sensory engagement eg. see, touch & feel, hear e.g. sounds of mahjong tiles
  • Focus on 1 sensation at a time
  • E.g. Mahjong:
    Arrange winning set, with necessary
    assistance (e.g.
    fewer choice of tiles,
    1 set at a time)
  • Sequence, sort
    according to
    patterns or colours
  • Helping to keep tiles or card
  • Games: Mahjong games, Rummy-O, simpler sudoku etc
  • E.g. Mahjong:
    Arrange a winning
    set of 13 tiles
  • Poker card activity - solitaire, fishing, 21 points, memory game with less cards
  • Mahjong games,
    Rummy-O etc,
    sudoku or learning
    other new games
  • Poker card activity - add up sums on 4 to 5 cards, memory
    games 

How to make a home safer for persons with dementia

Persons with dementia often cannot remember where they are and sometimes see the environment as threatening. The following tips can help to promote a sense of security and ensure safety at home for patients with dementia. 

1. Prevent accidents before they occur

  • Some accidents cannot be avoided. Do not blame or scold the person with dementia when an accident occurs. Identify and rectify the mistake instead.
  • Allow plenty of time; do not rush the person with dementia into performing a task.
  • If the person with dementia smokes, supervise cigarettes, lighters and matches, as unattended cigarettes are a fire hazard.
  • Keeping stimuli to a minimum will help patient to cope with his/her surroundings and thus reduce dysfunctional behavior.
  • Having visual cues such as pictures or labels on the outside of cupboards, wardrobes and drawers are also helpful in helping them remember where things are kept.
  • Label objects or rooms and place clear instructions that can be easily followed at visible locations to allow the patient to adapt to everyday tasks and maintain independence. 

2. Use home safety devices

  • Install gates at the top of stairs and secured handrails along the stairs.
  • Install safety latches or locks on cabinets to prevent mishandling of dangerous items such as knives and cleaning products.
  • Install electrical safety switches, gas leak detectors or smoke alarms if necessary. 

3. Remove clutter from the home

  • Remove all unnecessary furniture as this may block the patient’s path and increase the risk of falls, especially if they are using walking aids.
  • Put away items that may cause confusion. For example, do not leave shaving cream next to the toothpaste.

4. Remove items that may cause harm to the person

  • Lock up or remove medications, cleaning supplies and insecticides.
  • Put sharp objects, appliances and tools, such as razors, hair dryers and sewing machines in a place to be locked.
  • Make sure electrical cords are secured and cannot be tripped over.

5. Provide good lighting

  • Good lighting reduces illusions.
  • Place night-lights in staircase, hallways, bathroom and bedrooms.
  • Avoid lighting that casts shadows, which might cause the person with dementia to see things that are not there.
  • Ensure your home has sufficient natural lighting to help the person stay aware of the time, day and the weather. 

6. Make the kitchen safe

  • Remove knobs from your stove and oven when not in use or check with the Gas Company or an electrician about the best way to make your stove inoperable.
  • Supervise cooking if the patient is still able to cook.
  • Label items such as sugar, salt, flour, tea, coffee, etc.

7. Make the bedroom safe

  • Remove or fasten down carpet, rugs, runner or floor mats to prevent slipping.
  • Make sure there is a clear path to the bathroom or provide a bedside commode/ urinal.
  • Avoid thick mattresses or beds that are too high. Low beds are safer for elderly who is at risk for falls.

8. Make the bathroom safe

  • If your home has a number of rooms, ensure toilet signages (with illustrations) are available on the toilet door.
  • Remove unnecessary items in the bathroom except essentials such as soap, towel, toothbrush and toothpaste.
  • Use non-skid mats or strips on the floor or in a tub. Use a color that blends with the tub to prevent confusion.
  • Install grab bars in the shower and around the toilet.
  • Use a bath bench or a hand held shower.
  • Ensure the temperature gauge on the hot water heater is turned low to prevent scalding.
  • Keep the floor dry to prevent slipping on a wet floor.
  • Remove locks from bathroom doors to prevent patient from locking him/herself inside.

9. Prevent wandering

  • If the patient wanders, put latches higher or lower than eye level on doors and windows.
  • Try a slip of yellow or red safety tape or a sheet hung across doorways to discourage wandering/ opening of the front door. A “STOP” sign or “DO NOT ENTER” sign may help.
  • Avoid leaving items which may trigger the idea of wandering around the house, e.g. keys or handbag.
  • Place a black mat or paint a black space on your front porch; this may appear to be an impassable hole to the person with dementia.
  • Install “child-safe” plastic covers to door knobs.

10. Be prepared for emergencies

  • Have a plan for fire and other types of emergencies. Post the plan near the phone with numbers for the police, fire department and doctor. Write legibly and in large bold prints.
  • Keep recent photos handy to assist the police in case the patient wanders off.
  • Get the patient to wear an identification tag or card that includes statement “Memory Loss”.
  • Do not leave the patient at home alone at all times.

14 ways to prevent caregiver burnout

Stress and burnout are the most common problems experienced by caregivers. These can manifest as emotional outbursts, poor sleep, weight changes, lethargy, difficulties in concentration, and neglecting other roles and responsibilities.

Challenges of being a caregiver include:

  • Lack of understanding of the disease
  • Being unaware and unable to access the healthcare system
  • Lack of familiarity with available community resources
  • Negative impact on their work, marriage and family life due to caregiving duties
  • Fatigue and exhaustion
  • An “unequal” allocation of responsibility among family members
  • Differences of opinion among family members on treatment and care, and disputes
  • Unrealistic expectations on the caregiver by other family members
  • Financial burden

When caregivers experience burnout they can no longer care effectively, and this has a negative impact on both the caregiver and the person with dementia.

This is where self-care is important. Taking time to rest and recharge and seeking help and support will not only keep caregivers healthy, but also make them better care providers.

Dr Vanessa Mok, Senior Consultant for Psychological Medicine, and Anuradha Kaliappan, a Senior Medical Social Worker, both from CGH, share ways to prevent caregiver burnout.

  1. Take time out for yourself
  2. Make use of community resources
  3. Join a caregiver support group
  4. Learn more about the disease
  5. Share problems with and get support from family or friends. Family members can help give the caregiver a break by taking turns to care for their loved one
  6. Community services such as dementia day care, respite care nursing home and home-based support services can help care for your loved one
  7. Learn about the illness; write down your observations of the person. Keep records for quick reference when needed
  8. Attend a caregiver’s training programme
  9. Establish your caregiver role with health professionals
  10. Start planning in advance for potentially difficult decisions
  11. Tap into community resources like aic.sg; publicguardian.gov.sg
  12. Make 'me' time a priority
  13. Join a support group. Share your caregiving concerns with someone you trust
  14. Give yourself the credit you deserve

Support for dementia caregivers

  • Family of Wisdom by Alzheimer’s Disease Association (ADA)
    A three-hour programme that engages people with dementia in activities. There is shared caregiving during the session, allowing caregivers to have some respite.

  • ADAcafe aims to provide purposeful therapy, job training and possible meaningful employment for caregivers.

  • Support groups in English, Mandarin and Malay for caregivers are conducted by the ADA on weekdays and Saturdays. (https://dementia.org.sg/csg/)

  • Eldersit Respite Service
    An initiative that engages people with dementia in meaningful activities in their own home, build caregiver capabilities and offer respite to caregivers at home. (primarycarepages.sg)

  • Dementia Helpline - 63770700
    For anyone who needs help or information about dementia.
    Operating hours: Monday to Friday, 9am to 6pm.

  • Person-Centred Home-Based Intervention Programme
    Set up by ADA, this programme has an occupational therapist and a social worker visit the home to assess and advise on the management of the person with dementia.

  • Caregiver training designed to support both family members and foreign domestic workers caring for people with dementia. (https://dementia.org.sg/academy/)

  • Safe Return Card identifies a person with dementia who is lost. It has the caregiver’s contact details, so anyone who ‘finds’ the dementia patient can easily inform the carer of his/her location.

  • Dementia day care centres engage the person with dementia in meaningful activities during the day. Visit the Agency for Integrated Care’s website at aic.sg. Selected centres offer extended day care on Saturdays.

 

Ref: F26

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5 Must-Know Tips for Dementia Caregivers

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Caregiver Tips: How to Look After a Person with Dementia, Epilepsy, Alzheimer's or Parkinson's Disease

​Dementia Prevention: How to Reduce Your Risk