March 26, 2014 1 Comment
I am convinced that increasing the level of dementia awareness is essential to improve the quality of life of persons with dementia and their families and caregivers, and I’ve often blogged about this. I also mentioned this in my caregiver story that I wrote for the Alzheimer’s Disease International’s March 2014 newsletter, titled “Better dementia awareness will make a difference” (available on page 8 of this downloadable PDF file). I have also been discussing possible priorities with some volunteers. I think it is time to write a somewhat more structured blog entry on the importance of well-designed dementia awareness campaigns. (Though structured, this is an opinion piece, not some expert evaluation/ study report)
Dementia awareness is pathetic in India, a situation confounded further by misinformation and stigma related to the symptoms and to words like dementia and Alzheimer’s Disease. This results in multiple problems for affected persons, and my contention is that spreading dementia awareness is the key to improving the situation, and the fastest way to change things in the Indian society. For the purpose of this discussion, I look at the following broad areas:
- Benefits of increased awareness
- Awareness campaigns are an effective use of limited resources
- Sustained, well-designed campaigns should be used to make a lasting difference
Awareness of dementia is a foundational requirement for any work in supporting persons with dementia and their caregivers. For example, without sufficiently correct and widespread awareness of dementia, you cannot create a dementia friendly society. Yet several benefits of higher levels of awareness are not obvious. Here’s a list of some salient benefits:
- Early diagnosis and better medical support will be possible: With higher awareness levels, a person’s symptoms will be recognized as possible signs of dementia earlier by the persons suffering from them and/ or others who interact with this person. Persons with dementia may seek help earlier, and so may their families. Physicians and specialists may go through the diagnosis process (instead of dismissing concerns as old age or personality changes, etc.). Diagnosis may happen at the early stage itself, and a suitable mix of advice and medical support can improve the quality of life of the person.
- Societal support for families coping with dementia will increase: An overall societal acceptance/ understanding of the realities of dementia will make it easier for families to explain their specific situation and ask for help. An open, stigma-free recognition of dementia will mean that persons with dementia and their caregivers can ask for and receive appropriate help and support from persons around them, such as from friends, relatives, colleagues, etc. Persons around a family coping with dementia will be more understanding and supportive, and not mock at the person’s symptoms or suspect the caregivers’ motives/ actions.
- Dementia and care situations, experiences and tips will become part of normal public conversations: With dementia and care challenges out in the public discourse, dementia will increasingly be incorporated in various arts and productions. More movies, stories, etc., will include dementia situations. When some people start opening up about their personal experiences of dementia, others will, too. Experiences and tips will be shared, creating a supportive community. This will be very different from the current scenario where each family goes through its own learning curve in isolation and gets overwhelmed.
- Dementia and care topics may become part of educational systems. So students may be better educated on this, thus adding to overall societal awareness levels.
- Dementia related professions and careers may become viable/ attractive options: Persons considering career options may want to work in dementia research, or in offering dementia services.
- Entrepreneurs may be attracted to set up ventures: When entrepreneurs realize the growing need for dementia-related products and services, they may invest in them. This can further be facilitated if nodal bodies also create guidelines and standard project reports for potential services that such entrepreneurs can use as starting points.
- Corporates may include dementia projects in CSR initiatives: When a cause becomes prominent, it can attract the attention of corporate CSRs and other such entities, who may then take the awareness campaign forward some more steps by actively working for it. Or they may design products and services or sponsor research or help conduct studies, such as epidemiological studies, or fund the research required for preparing reports, and so on. They may even decide to adopt a city/ town/ locality and make it dementia friendly!
- Misinformation can be removed by the availability of abundant, authentic information: Currently, many myths and misinformation campaigns exist around dementia, including misleading “miracle” products and services that make tall claims about what they can achieve. These are able to thrive because genuine information is not available. Good levels of dementia awareness will squash such misinformation/ exploitation.
- Overall willingness of persons to participate in the dementia cause will increase: This may be in terms of willingness to take part in clinical trials and other studies, do volunteer work, etc.
Essentially, as dementia awareness grows, the advantage is not just the increased quality of life and support for persons with dementia and their families. There is a high likelihood of a multiplier effect as more and more persons get drawn into the cause and participate as advocates, volunteers, professionals, product/ service providers, and so on. Often when thinking of how awareness can help, volunteers do not give enough weight to the way awareness can snowball to create a movement. Yet awareness is not just the foundation required for more work on dementia and caregiving; awareness is also the motivator that can make some persons concerned and involved enough.
In my opinion, awareness has the potential to create a transformative movement to address this serious area.
Let’s face it; we just don’t have enough funds and persons to do all that needs to be done for the dementia cause. Therefore, we must use these limited resources available for the dementia cause by choosing projects carefully, after duly evaluating the trade-offs. For example, if we focus on and spend effort on creating a “dementia village” or a superb respite care, or making one city meet the criteria of a “dementia friendly community”, that may mean that we have to drop some other project.
Given this need to choose what is the best use of resources, I favour giving priority to spreading dementia awareness through a region/ state/ even entire India using well-designed campaigns, as compared to taking up projects that aspire for far better dementia support in some localized pocket. Reasons:
- Whatever initiative is chosen, dementia awareness is a foundation, and everyone involved in that initiative will anyway need very good levels of sensitization to dementia realities and also skills for supporting dementia. So an awareness campaign is anyway an integral part of any project. Running such a campaign in a well-designed, effective way is therefore unavoidable; the only aspect to debate is on the scope of such a campaign–should it be just one city/ facility, or a state/ region/ nation? Scalability may be a factor worth examining.
- We have no justifiable basis for deciding that only a particular city should benefit from the deployment of common resources. The estimated persons with dementia in India in 2010 were 37 lakh (3.7 million), and if we think of the family members and close associates trying to support dementia, the number of affected persons is even higher. This number is increasing every day. To focus scarce resources on just one city means ignoring other cities, other states, other regions. Focusing on big or medium cities ignores smaller cities, villages, tribal areas, and so on. How can such selective focus be justified? Surely any nodal body approach needs to embrace diverse populations first.
- The number of persons who may benefit from a local, focused effort is very low. A local effort may benefit dementia-affected persons in a local populace. On the other hand, the number of persons who may benefit from widespread awareness campaigns is much higher. Awareness campaigns can reach distant corners and a wide range of persons in ways that focused-location efforts cannot. They are more inclusive.
- Awareness is an effective approach when resources are scarce, because when awareness increases, there is a multiplier effect and more people are drawn to the cause. More people get concerned and may take initiative and pick up the skills that will further improve the situation. Awareness can create a far more widespread self-sustaining model of citizen involvement than a localized effort may.
- Some types of focused initiatives don’t create any advocates at all. One contender for time/ effort of volunteers is setting up services like respite care. A lot of investment goes into setting up a good facility that may benefit a few people, maybe 10 or 20, maybe somewhat more. Yet once the person with dementia passes on, the families do not necessarily contribute back their time and effort to the cause. They may not become advocates either; most of them have used this service because they were overwhelmed and later, they “move on.” While we definitely need respite cares, we have to appreciate that these cannot replace the priority we need to give awareness campaigns.
So yes, we need models of good dementia care, we need centres of excellence, etc. Focused efforts for ideal respite care, ideal dementia friendly city, and so on, can create nodal points that demonstrate and disseminate best practices. But again, we have to weigh the resources required and see the trade-offs.
My contention is that the potential gratification of creating a small but visible centre of excellence should not overshadow the broader and more inclusive benefits possible by spreading awareness. We may need solid work for such awareness campaigns, but we must not forget that a well-designed awareness campaign can create a paradigm shift.
We have already got some sporadic efforts to increase dementia awareness. These typically include:
- Efforts by persons who talk about their dementia-related experiences at an individual level in private circles: This is not very common in India as most caregivers do not talk of their experiences at all, or only talk to close friends. While important and good when it happens, it is much, much below the levels when it could make a transformative difference in either visibility or information. Also, as many caregivers have remained overwhelmed and less-informed through their dementia care journey, what they share is often more focused on problems faced and may lack any effective tips/ suggestions or reliable understanding of dementia.
- Efforts by volunteers/ concerned persons/ caregiver alumnus who are informed and articulate: Unfortunately, such dissemination is very local in scope, and again, not sustained and intense enough to be transformative beyond the immediate circles. Also, persons working on spreading awareness like this often have other projects, too, and the awareness aspect does not get their ongoing, uninterrupted attention and does not pick up momentum or coverage.
- Efforts put in across the nation for the few days corresponding to World Alzheimer’s Day or some such event: For a few days a year, dementia gets some space in newspapers and some visibility as “walks” and “talks” because there is an event that triggers it. Even in this, newspaper reports, often written in a hurry, contain inaccuracies. Coverage remains shallow, and not informative enough, but yes, for a few days, there seems a chance that awareness is being worked on. Then the event passes, and the momentum fizzles out. Worse, initiatives that were announced or facilities that were inaugurated may fall to the side.
I see several non-optimal aspects in this current awareness-spreading scenario:
- All these efforts are too sporadic and scattered to add together and create the momentum we need.
- Many events/ talks organized can only reach local persons and will only be noticed by persons already somewhat aware of dementia. Persons who know nothing about dementia (or feel it does not concern them) are not targeted sufficiently
- There is no centralized database that volunteers can draw upon for material that can help (like slides in various languages, videos, etc.), so individuals trying to spread awareness essentially duplicate quite a bit of effort. Also, some information they disseminate is loosely worded or even incorrect, adding to misinformation. There is no validation of the quality of information spread by volunteers.
- There is no framework wherein individuals can contribute smaller packets of effort towards the awareness campaigns. So many persons who may have spoken up (if they had the encouragement and a framework to fit into) do nothing.
- There is no check on mistakes made in media reports, which sometimes, written in a hurry and eager to be captivating, end up making mistakes. No corrections are printed.
In my opinion, the current efforts to spread awareness fall woefully short to what we in India need as a nation likely to face increasing numbers of dementia cases.
I am not aware of (and I’d be happy to be corrected) any sustained, well-designed, nation-wide campaign for spreading dementia awareness. Let me, however, describe what I think can be useful.
- The campaign should be designed for the diversities seen in Indian culture, including regional cultures in multiple Indian languages
- The campaign design should be made suitable for low-literacy/ illiterate audiences, possibly by exploiting audio and video media, TV, plays, etc.
- The content included should address dementia symptoms and progression, practical examples of impact of dementia on the life of the person and family, and general tips on how to interact with the person and empower them. The content should not in any way imply that Alzheimer’s is the only cause of dementia, or that memory loss is the only/ main symptoms, or that it happens only to old persons.
- The campaign presentation should be easy to understand and remember and make dementia more immediate to the target audience. It should convey that dementia can happen to anyone, and also that anyone can be thrust into the role of a caregiver. The presentation should not be alarmist/ negative in its portrayal.
- The campaign should make it clear that caregiving is tough and exhausting, and is well beyond the normal tensions of supporting mentally alert elders. It should make it clear that caregivers need support, not criticism.
- The campaign can be powerful and effective by suitably integrating relevant social psychology concepts. It should be well-designed, and be carried out on a sustained basis. The message/ concepts will not stick in the minds of the audience in the first instance; the messages need to be repeated in various ways.
- The campaign should negate myths and misinformation. It could use society role model/ celebrity interviews or other such means to remove stigma or negativity or secrecy attached to dementia. It should also remove any stigma/ societal judgment related to caregivers feeling overwhelmed or stressed.
- Supplementation of campaigns with authentic information available in multiple Indian languages.
- Supplementation of campaigns with information centres/ helplines that provide more information and clarifications.
Of course, this is far from enough when it comes to what the dementia cause needs. We need more products and services. We need support systems. We need financial support. Yet I feel that awareness is how one can kick-start the process, because once more people understand that dementia can happen to anyone, that anyone can be a caregiver, that current medication cannot prevent or cure, more people will be concerned. They will put pressure on the government for resources. They may volunteer. They may set up services. So much needs to be done that we need every helping hand. We cannot get the momentum and energy we need for the cause if we don’t improve awareness. Without more awareness, we will just continue to have a handful of persons, working for an ever-growing population of families coping with dementia.
Do share your comments below. I look forward to reading what you have to say (you can post anonymously if you wish)
Edited to add: If you are concerned about dementia/ care in India and are a volunteer/ potential volunteer/ just want to know more, please do check out this page: Resources: If you want to help caregivers/ spread dementia awareness. This page includes links to several discussions on areas that individuals (or groups/ corporates) can consider for contributing their own bit for this cause. There are also several resources/ documents that can be viewed/ downloaded in this section.
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