Dr Mona Nongmeikapam & Paviene Paulina
BUSTING A FEW MYTHS
1. Dental procedures, certain food items or medicines cause Dementia
2. Memory loss is a normal part of ageing
3. Being forgetful means that you have Dementia
4. It happens only to the elderly
5. There is no point in showing a doctor as there is no cure
6. And the worst one, there is no point in caring for or visiting a person with Dementia because they won’t remember you anyway!
We begin with a disclaimer that all the above are myths and we attempt to shed some light onto this modern pandemic that is rising at an alarming rate of one victim every 3 seconds. Simply put, Dementia is a slowly progressing illness which affects one’s memory, thought process, ability to perform tasks or learn new things, use of language and regulate one’s emotions or behaviour. Slowly, a person is left unable to perform one’s Activities of Daily Living (ADL) independently. Alzheimer’s disease is the commonest form of Dementia (60-80%).
The remaining types are vascular dementia, dementia with Lewy bodies, fronto-temporal dementia, etc.
WHY RAISE AWARENESS?
The 8th World Alzheimer’s Month (2019) aims at Raising Awareness and Challenging Stigma. Worldwide, around 50 million people have dementia, and there are nearly 10 million new cases every year. It is predicted that by 2050, there will be at least 152 million victims to this devastating illness.
India has over 4 million individuals affected by Dementia and our state ranks second just after Tripura in having the highest number of reported cases of Dementia. Tragically, on the contrary, WHO reports that 2 out of every 3 people globally believe there is little or no understanding of dementia in their respective countries. There also is a huge amount of stigma and misinformation that surrounds dementia, hence necessitating the need for this year’s theme.
PREVENTION IS BETTER THAN CURE
The risk of dementia can be drastically reduced by adopting an active lifestyle, keeping socially and mentally active, avoiding alcohol and nicotine use, a well-balanced healthy diet and maintaining healthy blood pressure, cholesterol and blood sugar level. Safer road practices, avoiding head injuries and good mental health are other preventive measures.
INTERVENTION IS A MUST
With progress of the illness, there is gradual decrease in mental speed, attention and motor dexterity.
Purpose of intervention: Since Dementia is a chronic degenerative illness, various activities can be adopted to slow down the process. The target is to increase quality of life of the affected individual as well as the caregiver.
Some practical guidelines for better care:
1. Attention span is less and they become easily distractible. Any activity should be short with short gaps in between.
2. Short sentences should be used for communication and speaking quickly should be avoided.
3. Clear repeated instructions.
4. A calm and patient demeanour while interacting with them.
Absolute NOs
1. Being Forceful
2. Be agitated
3. Scolding, shouting
Sometimes due to memory deficits, they may confabulate, i.e. make up facts and caregivers may think she is lying.
One has to realise that they are not doing on purpose and try to be empathetic.
Regular schedule can be made- to make it predictable for them and strictly followed. Using a sort of activity checklist can be a great aid for the patients and caregivers.
The decreased cognitive ability brings about a role reversal. This can bring a sense of decreased self-efficacy further leading to low self-esteem.
Sometimes they become agitated when they are not able to perform well. As caregivers we have to acknowledge that and give respect. Engaging them in work which they find expertise can help them feel a sense of purpose.
Simple chores like cleaning vegetables, sorting grains, watering plants can be done while making sure not giving sharp objects. Reading newspapers, playing Sudoku, cards, etc are all tricks to keep the brain working.
Many a times, behavioural problem like shouting, throwing things are a response to situations they feel uncomfortable with.
If caregivers analyse the triggers for it and modify then the behavioural problem may not persist.
Reminiscence therapy: reviewing life events and achievements is used for dementia patients.
This can be done at home by giving them time and discussing about their achievements, youthful life and the things they enjoyed doing with friends. Simple activities like singing folk songs, reciting folklores or poems could promote self-esteem, enhance communication and facilitate a better relationship with the caregivers.
Aromatherapy and playing soothing songs help to calm angry or anxious.
When the dementia progress, they may have difficulty doing complex tasks. Environment manipulation like making them wear elasticised pants, slippers, having easy access to all basic facilities, removal of sharp objects, rounded furniture, cues on the door or windows, etc are few of the methods that can be adopted to simplify the daily activities.
They may become confused with time, evening or day.
Re-orientation can be done about time and dates using calendars and clocks.
Sometimes, they may become adamant about some false information like past events, a sibling being alive though he/she may have passed away a long time. Confrontation or using logic will not help.
Just listening to them, making them talk about those events (How is he important, how is he like, what he likes, what kind of relationship they had) and distracting them later may prove helpful instead.
SEVERAL NEWER AND BETTER DRUGS are available to delay the disease process as well as to combat the emotional deregulations and behavioural disturbances, making life easier for the patient as well as the care-givers.
And finally CARE-GIVER BURDEN IS REAL. Especially the caregivers taking multiple roles and experiencing burn-out is common.
It is OK to admit being stressed or overwhelmed. Seeing a dear one being only a faint shadow of their glorious past can be traumatising.
Adequate role division and allocation among family members at home is important. Taking time out for self-care, socialising, following spirituality or just having a hobby is a must. The community can play a huge role with easily available educational materials for the care-givers and the society at large so that burden of stigma that comes from sheer ignorance is lessened.
Community day-care centres specially designed with Dementia patients in mind can ease the care-givers’ burden and also provide the patients with an opportunity to socialise in supervised, safe spaces.
Let us accept Dementia as an opportunity to wash away the harsh memories life bestows upon us at times and try create beautiful new memories every single day instead!
Dr Mona Nongmeikapam is a Consultant Psychiatrist and Ms Paviene Paulina is a Clinical Psychologist
(For any doubt or feedback, the authors can be reached at:
[email protected])