Understanding the person beyond the disease
Dementia is a powerful label and marks a long journey into a world of disempowerment where human attributes and abilities are progressively lost. Indeed, many consider this disease as tragic, costly and burdensome. Dementia often affects not only the person with dementia but also brings hardship and toil to the caregiver.
However, the person with dementia remains fully human and fully alive, behind the facade of the disease. To connect with people with dementia, we need to know them and have a deep appreciation of their past, because the past is a light to what goes on in the present. It is essential and a basic prerequisite to understand the person with dementia well as we undertake the often arduous caregiving journey with them.
Generally, people with dementia are not intentionally difficult or irrational. Their behaviours can often be best understood as expressions of unmet needs and in the light of their past habits and personalities. As they have difficulties expressing themselves with words, feelings and needs are often communicated through behaviours.
Christine Bryden, a writer and a person with dementia says, "for people with dementia our behaviour is normal, considering what is happening in our heads. Try to enter our distorted reality, because if you make us fit in with your reality, it will cause us extra stress." In order to enter into the reality of people with dementia, we need to feel with them and stand in their shoes; hence a high degree of empathy is necessary.
With good knowledge of the person and the situation, it is often not difficult to understand why the person acted and behaved in particular ways. Interpretation of behaviours may not always be straightforward, it requires patience, love and learning through trial and error. For example, agitation may sometimes be due to a noisy and unfamiliar environment triggering fear and anxiety. At other times it could be due to pain, discomfort or hunger for which the person has little means to express, short of calling out loudly.
Dementia brings us face to face with our humanity, and evokes fundamental questions about what it means to be human. Being human is not only about our human attributes and abilities, for these go away with progressive dementia. Being human is also about connecting with others and forging lasting relationships. For this reason, even as dementia takes its toll on the person, the people around him help to preserve his identity and humanity by maintaining meaningful and loving relationships with him. Only in this way can life still be worthwhile and purposeful for the person with dementia and those close to him.
Planning the day for a person with dementia
Activities are "things we do" such as daily chores, work, leisure and play. Activities help to structure time and can make the best of a person's abilities, enhance quality of life, promote relaxation and bring pleasure. Activities need to be individualised as no two people with dementia are the same. With the progressive nature of disease, caregivers need to have realistic expectations when selecting activities. Meaningful activities promote socialisation and enhance self-esteem and well-being.
Considerations when planning activities:
Person
• Knowing the person well in terms of basic personality, significant life events, work history, hobbies, social and recreational preferences.
• Understand current cognitive and functional abilities to know strengths and limitations. Some modifications may be required to adapt to the person's capabilities.
Activity
• Caregivers need to be sensitive and be on the lookout for the reactions of the person during activities. These include fatigue, non-verbal cues such as grimacing and frowning which may indicate pain or other physical discomfort.
• Be aware of the person's physical limitations such as hearing, visual impairments and difficulties in performing simple movements due to medical ailments.
• Be flexible and acknowledge the person's changing interests and abilities.
• Use age-appropriate activities and avoid materials that appear childish
Approach
• Be sincere and genuine when approaching the person with dementia. It always helps to respect and not undermine the person's decisions and preferences.
• Focus on one task at a time, break activities into simple and easy-to-follow steps. Too many instructions can be overwhelming
• It is important to communicate with the person even if he appears not to be able to respond. This can help to maintain connectedness and allow recognition and respect for the person with dementia.
Routines and reminders
With time, the ability to carry out every day routines will decline. It is therefore important for people with dementia to still maintain some independence for as long as they can. This helps to maintain confidence and enhance self-esteem. Try to think of the things that your loved ones used to enjoy doing and try to keep them involved in some way. For instance, a homemaker may still enjoy folding laundry even if they are no longer able to operate the washing machine without help.
Routines are tasks which are easily done according to a set way or method. It is easier if the person can continue the routines he/she has been used to for much of his / her life.
Reminders are helpful especially during the mild to moderate stages of the disease. It can be in the form of written notes, setting the timer alert in electronic devices or a phone call.
Considerations when planning daily routines:
• Do not rush - it will only cause more confusion, anxiety and frustration.
• Keep a sense of structure and familiarity. For instance: try to keep to consistent timings for daily routines such as waking up, shower, meal times and bedtime.
• Be flexible and allow the person to make choices.
• Break the task down into simple steps.
• Encourage rest - people with dementia can tire quickly.
• Reality orientation to keep the person aware of the date and time of day.
• Encourage performance of habitual and over-learnt tasks such as drying dishes, folding clothes and watering plants.
• Help people with dementia "feel useful" by letting them help whenever and wherever possible e.g. feeding the pets, carrying shopping bags.
• Caregivers should try to avoid taking over if the person is trying to complete a task and allow him to continue at his own pace. This enables a sense of control and engenders good feelings.
Daily routines (Table 5)
Common problems | Possible solutions |
Eating• Little interest or initiative to eat or drink • Eating all the time | • Set alerts as reminders, write notes or call them to remind them • Encourage small and frequent meals • Place cups filled with water to allow them to sip throughout the day • Eat or drink with them • Engage them in other tasks by way of diversion • Serve healthy snacks which are low in calories e.g. fruits • Serve food in small portions |
Grooming
| • Lay out new clothes and help them with choice of clothes • Have more than one set of the same clothes in case the person insists on wearing the same clothes every time • Allow time to let them decide & assist in promoting choice • Remove some of the clothes in the wardrobe if it appears cluttered |
Bathing• Refusal to bathe | • Avoid coercion, be flexible and try again later. Never make a big fuss of the issue • Keep to the same bathing routine • Use soap or shower gels that the person is familiar with • Try to provide a reason that they may accept e.g. bathing before going out |
Toileting• Has problems locating the toilet and / or unlocking the toilet door | Possible solutions: • Use visual cues such as putting signs on the toilet door • Paint the toilet door in bright colours • Set a toileting schedule • Remove the bathroom lock if necessary |
Next Chapter: PLANNING AHEAD
