Trained attendants and respite care for dementia: Sharing suggestions for volunteers from India

Yesterday, I shared my observations related to availability and quality of trained attendants and respite care for dementia in India (Trained Attendants and Respite Care for dementia: Observations from India); today, I am setting down some thoughts on what concerned agencies and volunteers can do right away to make a difference in a way that can scale up fast. I’m no policy expert, but hey, desperate people get wild ideas, and here are mine.

For those trying to help caregivers, the pathetic state of available support is disheartening. Day after day, one is forced to break the sad news to overwhelmed caregivers and I’ve seen many concerned persons getting distressed that they cannot help the way the callers (or email-writers) obviously expect them to do. I’ve felt down myself, both as a caregiver and a volunteer.

Some volunteers begin considering setting up agencies or respite care homes themselves. They redirect energy, time, and resources into trying to set up whatever is needed to train a batch of attendants, or start planning a specialized dementia care home. Often, many of these persons realize midway this is just so much work, and doing this means they cannot do anything else. They feel they are spending all their energy for something that may benefit at most 10 or 20 families, and wonder whether this is more important than what they were doing earlier. Also, being committed to a cause and passionate about it does not naturally equip one to run a full-fledged establishment for fulltime care. These volunteers/ organizations then give up, or start something that fizzles out, having lost valuable time and energy (and sometimes goodwill) along the way.

Here is what I think:

Ideally, there would be this huge nodal body that sets up gazillions of agencies that supply excellent trained attendants at very affordable prices, and also creates heaps of day cares and respite cares so that no dementia patient remains unsupported.

But that does not seem feasible, at least in the short run🙂

We need help now. We need something to start providing relief soon, in a widespread way. We cannot depend solely on the actions of existing dementia care volunteers, already a small and over-stretched community. In addition to increasing the community of persons committed to help, we must get others interested in creating appropriate facilities.

Can we attract entrepreneurs in related fields–hospitality, medical services, assisted living housing, whatever–to set up appropriate, good-quality agencies and day care / respite care for dementia? Perhaps the dementia nodal agencies and volunteers can create an environment that supports and supervises others to do what is needed. Maybe we can make persons/ organizations with the necessary drive, energy, resources, and experience interested enough to enter this field, stay in it, and provide good-quality service. Existing dementia care experts and volunteers can act as facilitators and moderators at least in the short run, in addition to trying to be creators and suppliers in the long run…

I do not know how commercially feasible setting up such agencies and respite cares is. But that’s exactly the point…can those who know make this knowledge public?

Suppose someone works out a good model for an attendant-supplying agency, one that is commercially viable, and makes it available; surely there will be investors and entrepreneurs who will come in? Then it is a matter of ensuring that the work they do is good quality…

Thoughts in this direction, for what I think may be a starting point:

  • Create “concept papers” that discuss possible project scopes and pros and cons of these for setting up various facilities (like home care agencies and respite care), so that wannabe entrepreneurs can decide what would interest them and then get started on preparing a project report for potential promoters, funders, banks. Make these concept papers available free of cost.
  • If such ventures (good quality agencies and respite care and so on) are not commercially viable, create models for streamlining subsidies and for supplementing these enterprises with fund-generating activities
  • Create detailed checklists and maybe even sample plans (floor layouts, equipment specifications, nursing plans, rehabilitation plans, etc.) for all aspects that such enterprises may need, and a database of suppliers/ importers/ construction agencies that can help set up the agency/ respite care.
  • Create lists of all statutory compliances and clearances such a venture will require, and maybe some contact information for resources to know more about what each of these entail. These things vary across states, and so statewise guidance is needed.
  • Create training material that attendant-supplying agencies and respite cares can use to train their staff. Make it available (perhaps free). Maybe also conduct classes for them
  • Have a system of supervising and grading the functioning of such enterprises on a regular basis, a certification that needs renewal. Have a database of certified agencies/ respite care available publicly.
  • Have ongoing refresher courses to make sure the management and staff of such enterprises remains state of art on dementia care
  • Have surprise checks on approved agencies/ respite care and on the services they offer, and also gather customer feedback to suggest improvements/ corrections
  • Use some high-quality, well-run facilities as samples and nodal points to disseminate information on what a good agency/ respite care involves

What I am essentially saying is, while ideally a central agency should have been able to do all that was needed, we don’t have to (and cannot afford to) wait for that, and concerned persons can at a minimum create an environment to encourage enough people to set up good-quality viable facilities and then the concerned persons can monitor and certify these facilities to make sure the quality is good.

In case setting up such facilities is commercially viable, this should bring in enough entrepreneurs. If it is not, we anyway need to first find ways to fund the gap.

A pool of easily accessible material to start off such facilities increases chances of suggesting best practices and reduces the “reinvent the wheel” wasted energy of interested entrepreneurs, and also reduces chances of costly mistakes (costly not just in terms of money, but also the human costs involved)

If dementia care experts focus on advising the entrepreneurs to set up facilities, they have more time left for areas they are skilled at (advocacy, training, counselling, conducting studies, gathering relevant data) instead of being sidetracked into non-skill areas like evaluating diesel generator suppliers and recruiting replacement cooks and getting water connections and various municipal permissions, or trying to directly supervise such work. As the number of concerned persons and organizations increases, their capacity to directly undertake projects may go up, but till then…

And various volunteers and voluntary agencies can work at different levels, each adding its bit in creating a facilitating environment.

For India to have effective support for dementia patients, including support for dementia home care, we need lots of infrastructure and support. Yet quite a bit of the work required does not need dementia care expertise so long as there is a sturdy dementia care framework within which to design and operate; it should therefore be feasible to evolve a model that combines expertise and multiple resources outside the dementia care community, and thus scales well.

This is just a seed of an idea I have. My intention is to throw it open for others so that they can pool back their ideas. Maybe someone has some bright idea and will be prompted by my post to share it, and we will all be better off for it.

Because one thing is clear…we need to act fast. Not just for others, but because we may be part of that “others”, too. The systems we help set up could help us some day. Dementia prevalence is higher than people suspect…

Please share your thoughts and ideas, too.

This post is the second part of a two-part post. The first part can be read here:Trained attendants and respite care for dementia: Observations from India

Some other links that could be relevant are:

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

3 Responses to Trained attendants and respite care for dementia: Sharing suggestions for volunteers from India

  1. Pingback: Trained attendants and respite care for dementia: Observations from India « Swapna writes…

  2. Pingback: Trained attendants for dementia home care: sharing experiences « Swapna writes…

  3. Pingback: When families need attendants to help them care for dementia patients (India) « Swapna writes…

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