By Catherine Siow

NEVITABLE is the progressive deterioration in the health of an Alzheimer's disease (AD) patient as the years pass by. The emotional and physical toll on both the afflicted person and their family caregivers are tremendous, especially when the patients do not recognise their nearest and dearest anymore - a condition referred to as agnosia. Distressing though it may be, the caregivers can still help to maintain the dignity and quality of life of their loved ones by managing the symptoms.

Dr Yau Weng Keong, consultant physician and geriatrician at Hospital Kuala Lumpur, visiting consultant physician and geriatrician at Hospital Tuanku Jaafar, Seremban, and member of Alzheimer's Disease Foundation Malaysia (ADFM) advisory panel of medical specialists, gives the low-down on agnosia and related symptoms of sundowning and wandering in AD patients.

What is agnosia?

Agnosia is the inability to recognise close ones or objects. The affected person is unable to make meaning out of one or more of their senses despite intact sensory abilities. For example, the person may have good vision but is unable to identify a lamp.

Agnosia can lead to the inability to recognise family members and even one's own reflection in the mirror. There are multiple other causes besides AD.

What about sundowning? Why does it occur?

Sundowning is a phenomenon unique to AD whereby the person becomes more confused, agitated, restless and insecure in the late afternoon and early evening. The patient may become more demanding, suspicious or disoriented.

No one is sure what causes sundowning, but most likely it is from progressive deterioration of the brain. As the AD progresses and the person understands less about what is happening around them, they become more frantic in trying to restore their sense of familiarity or security.

Sundowning may relate to lack of sensory stimulation after dark. At night, there are fewer cues in the environment, with the dim lights and absence of noises from routine daytime activity. It can be worse after a move or change in the person's routines. Also, AD patients tire more easily, even with very few demands on their thinking ability. This makes them more restless and difficult to manage when they are tired.

How can one deal with such a problem?

Strategies for handling sundowning include the following:

• Keep the person active in the morning and encourage him/her to have a rest after lunch. If tiredness worsens sundowning, an early afternoon rest may help.
• Don't physically restrain the person. Let them pace where they are safe. A walk outdoors can help reduce restlessness.
  
• Some people are comforted by soft toy animals, pets, hearing familiar tunes or an opportunity to carry out a favourite pastime.
  
• Try not to arrange baths or showers for the late afternoon if these are upsetting.
  
• Nightlights or a radio playing softly may help the person sleep.
  
• Some people find warm milk, a back rub or music calming.
  
• Some may need medication. Discuss with the doctor.
  
• Avoid arguing or asking for explanations.
  
• As caregiver, remember to have adequate rest yourself.

Why do they wander?

AD patients wander for multiple reasons. Some of them may be searching for something, such as the bathroom, or trying to get away from a noisy or confusing environment. A few may even be trying to fulfil tasks from their former occupations or reliving the past.

If they've recently moved to a new environment, wanderers may be searching for something or someone familiar. They may also be trying to satisfy a basic need, such as hunger or thirst, but can't remember what to do or where the kitchen is located.

AD sufferers often lose the ability to vocalise pain. Instead, they may become restless or try to escape their pain by wandering.

If wandering occurs at the same time every day, it may be linked to a lifelong routine. For instance, a woman who tries to leave the nursing home every day at 5pm may believe she's going home from work. This belief could be reinforced if she sees the nursing home staff leaving at that time. Having an activity at that hour could distract her urge to wander. Another option might be to have staff exit through a different door.

How best can the family caregiver deal with such episodes of non-recognition, sundowning and wandering?

The most important element is the person caring for the patient. There is a need for the caregiver to have inner strength and a cheerful spirit to give their loved one tender loving care. Caregivers must try and get more information (through reading and talking to others), and ventilate their problems and feelings. Otherwise, their emotions may have a negative impact on their loved ones. This is especially so with agnosia.

Seeking help from doctors, nurses and others is also important.