Living together with dementia: Hope for tomorrow

DR. AJAY RISAL

My mother has been showing a bit disturbing changes in her behavior for the last few months. She often forgets where her room is and is not able to reach the bathroom even when the lights are on. She forgets the name of her brothers who come to meet her. If we try to ask her anything regarding her problems, she becomes irritated sometimes, while during some other times, she starts weeping and moaning…..”

This was the account given by a reputed officer in Nepal Government regarding his 70-year-old mother who was herself an educated professor and had retired from her job just 5 years ago. Hearing this story, I was a bit worried and suspected the possibility of cognitive impairment and asked him to bring her to my OPD. I am very much concerned that this lady, who had been leading an active professional life till a few years back, may turn out to be one of the case of Dementia (Alzheimer’s is the strong possibility) increasing the disability load to herself and an emotional burden to her caregivers.

Dementia is not a new topic to discuss nowadays even in our part of the world. As shown by the statistics, every 4 seconds, one person in the world develops dementia of some type; while every 71 seconds, it turns out to be of the Alzheimer’s type. Today, it is estimated that 30 million people worldwide suffer from Alzheimer’s disease affecting about 10 per cent of the people aged 65 and above; which doubles roughly each decade after age 65. As the population is ageing in the current world scenario, it has been projected that 50 per cent of the people in the age group 85 and more may have Alzheimer’s.

Dementia is not a single disease entity but a word given for a group of symptoms caused by the disorders affecting the brain; i.e., amnesia (memory disturbances), agnosia (inability to recognize familiar objects despite intact sensation), aphasia (inability to understand or express languages), apraxia (inability to carry out or execute any tasks despite intact motor functions) impairing the activities of daily living ultimately leading to personality change, emotional and behavioral problems as explained in the above mentioned scenario. It not only makes the diseased individual disabled (in personal care, occupational functioning, family situation and social context) but also heightens the caregiver’s stress. It has still remained the area of high stigma among the people. Hence, the theme of this year’s World Alzheimer’s Day “Dementia-living together” can be regarded as the most appropriate so that people (including individuals suffering from dementia and their caregivers) should be able to understand dementia, communicate with each other regarding the disease and journey with it together.

There are around 20 per cent treatable or reversible dementias which may be due to thyroid or any endocrine abnormalities, substance intoxication, drug toxicity, infections, vitamin deficiencies etc that can be reversed once the etiological factors are diagnosed and treated. Similarly, some of the psychiatric illnesses like depression also present with memory complaints, commonly known as depressive pseudodementia.

Most important aspect in the management of Alzheimer’s Disease is to handle caregiver stress that may come up with complaints of anger, sadness, mood swings, headache, and back pain, difficulty in concentration and sleep disturbances (a sort of burnout syndrome). Caregivers should be educated regarding the disease process, symptoms, management options, prognosis and possible outcome well in advance.

As the patients with Dementia may sometimes show mood and psychotic symptoms as a result of electrolyte/ neurotransmitter imbalance or due to coping dysfunction, caregivers may be more worried if they are not aware of the disease condition. There may be features of sun downing and patients become delirious in the evening hours. In such situations, some reorienting strategies, environmental changes and pharmacological agents may be required in addition.

Similarly, memory problems may make the patients with Dementia unable to handle finances, family and social responsibilities. Arrangements to transfer such duties to the close relative chosen by the patient may be necessary.Caregivers of Dementia also need extra attention by the psychiatrists, psychologists, and social workers in addition to the doctors looking after their patients with Dementia to take care of their emotional and stress related problems. Palliative and end-of-life issues have to be discussed freely and openly with the caregiver. We must minimize the stigmatizing issues with our joint efforts.Situations are still grave but let us not lose all our hopes on dementia management. Researches are being done all over the world to tackle with the problems of Dementia. Some drugs targeting neurotransmitters (mainly acetylcholine) are already in our hand. Advanced studies on the genomic level are going on. Options of stem cell transplant have also been looked upon with hope. There is always some light at the end of the tunnel. Hence, hoping for the better tomorrow, why not we all live together with Dementia?

Dr. Risal is Psychiatrist at Dhulikhel Hospital