Pukning Pothasang : Let's Talk About Dementia
#LetsTalkAboutDementia

Dr. Mona Nongmeikapam *

The 21st of September every year is celebrated to commemorate World Alzheimer’s Day, the disease that impairs one’s ability to remember.

Why talk about Dementia?
o 2 in 3 individuals claim that there is no understanding of Dementia in their respective countries.
o There is a massive amount of stigma and misinformation around Dementia.
o The numbers are just too alarming to be ignored anymore:

ESTIMATED GROWTH IN NUMBER OF PERSONS WITH DEMENTIA 2020-2050

ONE NEW CASE OF DEMENTIA EVERY 3 SECONDS GLOBALLY

Let's talk about dementia

September 2020 is the ninth World Alzheimer’s Month and this year, the aim is to highlight how taking the time to talk about Dementia can have a huge impact on the people affected by it. Given the alarming magnitude of the illness, it is not enough for just the Alzheimer’s Disease International or certain agencies or ‘expert panels’ to talk about Dementia.

This year the goal is to get everyone, whose daily lives get affected or could potentially get affected by the condition, talking about it.

Why talk about it at all?

* In context of COVID-19:

1. The COVID-19 outbreak has highlighted the lack of preparedness of health systems globally to provide routine services and support to people living with chronic conditions such as dementia.
2. During lockdown and restrictions, it is essential that persons with Dementia are not socially isolated.
3. It is important that people keep talking about Dementia, seeking out information, advice and support. Early intervention is the key and hence one must not wait until after lockdown or restrictions to seek help/ clarifications if experiencing symptoms of Dementia. One can opt for tele-consultations, helplines, websites, social media and online events to stay up to date.

* Reduce the stigma:
50 million persons world-wide is too large a number to feign ignorance or hide under the carpet. This World Alzheimer’s Day, WE invite YOU to talk about Dementia. Stigma arises from lack of knowledge, inaccurate assumptions and fear.

If more and more persons share their experience with Dementia and how they are combatting with its challenges in their daily lives, this can help normalize and reduce the stigma and the negative attitudes that surround the condition.

* Loneliness:
Receiving a dementia diagnosis can make a person feel alone, hopeless and helpless. Many primary care-givers also express feeling isolated and frustrated. More awareness, more compassion and support groups can help.

* Misinformation:
The list is endless, ‘Memory loss is a normal part of ageing’, ‘Being forgetful means that you have Dementia’, ‘There is no point in showing a doctor as there is no cure’, ‘There is no point in caring for or visiting a person with Dementia because they won't remember in any case’.

FACTS:

Dementia is a collective name for progressive degenerative brain syndromes which affect memory, thinking, behaviour and emotion, rendering an individual dependent for routine activities of daily living. Alzheimer’s disease and vascular dementia are the most common types of dementia, responsible for up to 90% of cases of dementia.

Symptoms may include:
o loss of memory
o difficulty in finding the right words or understanding what people are saying
o difficulty in performing previously routine tasks
o personality and mood changes.

There is currently no cure for most types of dementia, but symptoms management, quality of life of affected individuals and prevention of disease progression can be done by pharmacological and behavioural therapy and support.

* Denial of disease and delay in care:

Dementia is a chronic degenerative process and early diagnosis and prompt intervention are the key operative words in its management. Statistics has revealed that 35% of care-givers world-wide have confessedly hidden the diagnosis of Dementia of a family member and more than 50% of them have reported their own health deterioration as a result of their caring responsibilities even whilst expressing positive sentiments about their role.

* Over-diagnosis and Pseudo-dementia:

Many younger individuals report to our OPDs complaining of ‘Dementia’; many psychiatric conditions like anxiety, depression, etc. may affect the level of cognitive functioning and usually remits with treatment of the underlying primary cause. Pseudo-dementia is specifically used to describe the type of cognitive impairment that mimics dementia but actually occurs due to depression and is typically seen in older individuals.

* Share what works for you:

Practical guidelines for better care can be formed only when care-givers world-wide share their experiences and what worked best for them.
1. A regular predictable schedule with an activity checklist helps.
2. Any activity planned for them should be short with short gaps in between keeping in mind their short attention span and easy distractibility.
3. Short clearly enunciated sentences should be used for communication.
4. Confabulation due to memory lapse should not be mistaken for lying.
5. Keeping them engaged in simple activities and chores gives them a sense of purpose.
6. A daily dose of brain enhancing activities like reading, writing, puzzles, or reminiscing past events etc. and physical exercise like brisk walking should form a part of their routine.

* Caregivers burn out and support groups:
Adequate role division and allocation among family members at home can lessen the brunt. Taking time out for self-care, having a social life and professional pursuits is equally important. Reaching out to support groups for help or just to ventilate is required.

Seeking professional help including regular doctor follow-ups, additional nursing care and day-care centers if needed are mandatory for the patient and the care-giver’s well-being.

* Preventive measures:
1. Adopting an active lifestyle (PUBG generation, beware!)
2. Keeping socially and mentally active
3. Avoiding alcohol, nicotine and other substance abuse
4. A well-balanced healthy diet and maintaining healthy blood pressure, cholesterol and blood sugar level
5. Safer road practices to avoid head injuries
6. And above all, good mental health.

Dementia is not a normal part of ageing and that those affected with dementia should be empowered to live as well as possible. With the alarming numbers and massive economic burden of care, we cannot continue to feign ignorance or pretend that Dementia does not exist.

In the times of Hashtags and rising social awareness, #LetsTalkAboutDementia.

Only then we can hope for increased coverage of diagnosis and support, risk reduction and improved awareness of Dementia. This could reflect in improved research and understanding of Dementia that could lead to new, improved treatment modalities.

September is World Alzheimer’s Month! #WorldAlzMonth

The voices which taught us how to talk need us to raise our voices for them today. Let us do our bit. Let us start by talking about Dementia.