January 7, 2012 3 Comments
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.