Today is World Alzheimer’s Day:

When memory fails …

By Carol Aloysius

Rita, 63, was a busy, active housewife who was constantly on the ‘go’. Up at dawn to cook meals for her elderly husband and two grown children who still continued to live with their parents despite being in their late 20s, she spent the rest of the day cleaning, marketing, gardening and reading. She also regularly indulged in her favourite past time of doing crosswords. “It helps to keep my memory sharp”, she would tell anyone who questioned her passion for this particular past time. .. However, for the past few weeks she found that her usual excellent memory seemed to be slipping…

For one thing she was constantly misplacing things. She had trouble remembering simple things like where she had kept her car keys, why she had opened the fridge door, where she had kept the broom which she had just used to sweep the floor. She even had trouble remembering the name of her two pet cats, including her domestic of many years. Sometimes even the names of her family members eluded her.

Having put down her lapses in memory to ‘old age’, the family was jolted into realisation that something was seriously wrong with Rita only when she took to slipping out of the house at odd hours of the day and having to be brought home by neighbours since she could not remember where she lived. When she was taken to a neurologist, her family was devastated to learn that she was diagnosed as having Alzheimers Disease (AD). “Our whole world revolved around my wife who was a fiercely independent woman. Now she’s as helpless as a baby and we have to take care of her”, laments her husband.

Sixty year old Lakshmi’s house was once filled with the sounds of laughter and happy chatter. When her husband died and her children and grandchildren left the family home, Lakshmi found herself becoming increasingly depressed. “I was living alone with few visitors to brighten my day. I began losing my ability to sleep and desire to eat”, she said. She also began experiencing memory loss. When a niece took her to the family physician, he diagnosed her condition as the early stages of Alzheimers disease (AD).

Memory loss caused by Alzheimers is increasingly affecting a significant number of persons worldwide. Worryingly, this condition, once commonly found in people over 70 years, is now seen in people less than 65 years of age and even among those in their 50s and late 40s. Dealing with the disease is harder for the caretakers than the patient when it reaches an advanced stage as the patient needs full time attention, since he or she is unable to perform even the most trivial daily tasks such as brushing one’s teeth, washing one’s face, using the toilet, bathing or changing one’s clothes. For family members, the most distressing aspect of the disease is the inability of their parent/aunt to recognise them.

All this puts a severe psychological strain on all those closely involved in caring for an Alzheimers patient. Yet, in spite of the fact that more people are now being afflicted with Alzheimer’s disease (AD), not many are aware of the symptoms or how to deal with it. To find out more of the disease.

What is Alzheimers Disease?

A Neurologist to whom the Sunday Observer spoke, described AD thus: “AD is an illness, of the mind. It is also an irreversible, progressive brain disease that slowly destroys memory and thinking skills, and eventually the ability to carry out the simplest tasks. Age, he emphasised, was the most significant contributory factor.

The classic sign of early Alzheimer’s disease is gradual loss of short-term memory. Symptoms vary from person to person, but all people with Alzheimer’s disease have problems with memory loss, disorientation and thinking ability, trouble in finding the right words to use, recognising objects (such as a pencil), recognising family and friends, and may become frustrated, irritable, and agitated.

As the disease progresses, physical problems may include loss of strength and balance, and diminishing bladder and bowel control. As more and more of the brain is affected, areas that control basic life functions, like swallowing and breathing, become irreversibly damaged, resulting eventually in death. Symptoms progress at different rates and in different patterns.

The appearance and progression of symptoms will vary from one person to another, he says. On average, from onset of symptoms, people with Alzheimer’s disease can live from eight years (the average) up to 20 years.

Treatment

No treatment is yet available that can stop Alzheimer’s disease. However, some drugs may help delay the progression of symptoms associated with Alzheimer’s disease. Also, some medicines may help control behavioural symptoms, such as sleeplessness, agitation, wandering, anxiety, and depression. Treating these behavioural symptoms often makes people with Alzheimer’s more comfortable and makes their care easier” he points out.

However much of the well-being of the patient depends on the Caregiver, he adds.

A psychologist we spoke to explained why. “As the disease progresses, more and more patients will become dependent for self-care and activities of daily living (feeding, washing, toileting, grooming, dressing etc). This stage will require constant carer support. Even in the early stages, carers may be needed to accompany patients when they go out as they have problems with orientation. Since caring is a full time job the carer too may be in need to counselling and suffer from mental impacts. In fact, both the patient and the carer may need this at different stages.”

Although caring for Alzheimers patients requires special skills, few efforts have been made in this direction until Lanka Alzheimers Foundation (LAF) came forward with an innovative training program to train care givers.

Sri Lanka Alzheimer’s Foundation

Set up to improve the quality of life of those with Alzheimer’s and related dementia and enhance the well-being of their families and carers, the Sri Lanka Alzheimers Foundation (LAF) is the first non-statutory organisation dedicated to advocating and addressing the needs of those diagnosed with cognitive impairment and dementia. It is an approved charity (Gazette Notification No 1225), incorporated in 2001 and registered with the Ministry of Social Service and since its inception, it has made a significant contribution towards supporting both Alzheimer’s patients and their carers.

“The services of LAF are open to all on a no-charge basis, regardless of ethnicity or religious background. “If you are concerned about your memory or that of a loved one, if you are a family carer of a Person With Dementia (PWD), if you are interested in receiving education and training, or if you are a health professional wishing to refer a PWD to our services, we invite you to talk to us. The right to confidentiality is maintained at all times”, says Lorraine Yu Founding Director and President of the Foundation. Services provided by LAF include: Raising awareness and eradicating stigma - thereby creating a dementia-friendly environment so that PWDs and their carers do not feel trapped in the home environment.

As she says, caring for a patient with Alzheimers Disease is not easy. Currently we conduct several programs both to educate and provide information. We also have a Befriending and Counselling program. In addition, we also conduct memory screening programs. The Foundation runs an Activity Centre (for persons diagnosed with Mild Cognitive Impairment or dementia where our clients engage in social interaction, mental stimulation and physical activity, which has a positive impact resulting in the retarding the progression of the illness).

The Helpline: 0112667080 or access website: www.alzlanka.org

The public can also help by volunteering at the Activity Centre or by participating in the annual Dementia Awareness Campaign and other fund raising events organised throughout the year to sustain the services offered to people who have been forgotten by society because their memory has failed them.