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.

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.

Observe these simple do's and don'ts when caring for a dementia patient.

 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.

More tips for dementia caregivers

Remind yourself that the person with dementia (PWD) is not being difficult. All behaviours are a means of communication, and establishing what he or she is trying to communicate can help resolve the problem quickly.

Reassure the PWD often and distract with calming activities, such as playing a favourite song.

As the caregiver, It is important to get support and take regular breaks when you feel overwhelmed.

If the behaviour becomes more challenging, talk to the PWD’s doctor about alternative ways to manage.

a) How to communicate more 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

b) How to make a home safer for persons with dementia

- Have ample lighting

Good lighting enables a person with dementia see clearly and make better sense of their surroundings. Ensuring your home has natural lighting also helps the person stay aware of the time, day and the weather. To have better control over the amount of indoor lighting, use dimmer switches.

- Keep floors clear at all times

Remove floor mats and rugs from the floor as they can cause trips and falls. Also, make sure cables for lights and other appliances are not a tripping hazard.

- Use colour and labels for furnishings and home items

Dementia can affect a person's ability to differentiate colours and to view objects in three dimension.

By using bright and contrasting colours for furniture, it can help persons with dementia identify things more easily.

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.

- Ensure easy bathroom access

Having difficulty locating the bathroom can definitely cause anxiety, especially for those with dementia. If your home has a number of rooms, put signs consisting of a picture of a toilet with the word 'toilet' on bathroom doors, at a height that is easy to see.

Remove unused items to prevent causing distraction/confusion to the dementia patient.

- Install grab rails, alarms and sensors at home

This will help your loved one with dementia stay safe at home, especially if they live alone - providing you with peace of mind too.

Dementia-related behavious 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

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.

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.

Caring for people with dementia can be challenging and demanding. Caregivers can experience social isolation and physical exhaustion, as well as having to bear the financial burden of caring for someone with the disease. Feelings of frustration, anger, guilt and anxiety can set in.

However, caregivers also report that the bond between them and the person with dementia deepens through care, companionship and service. Their problem-solving and relationship skills also improve, and they form new relationships by engaging in community services.

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

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. 

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 a better care providers.

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

• 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 6377 0700
  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.