Last week I proposed that we moderate or move our accessibility, assistive technology, rehabilitation engineering, and eHealth efforts away from direct solutions for people with Alzheimer’s and start to concentrate more on those who do the caring. Based on our experiences, there are seven pieces of practical advice I’d like to give to families who will soon become carers, and the elucidation of some of the unique problems we need to think about with regard to technical provision (next week).
First my seven pieces of practical advice (in the order you should do them):
- Sort Out Finances – You’ll soon be in sole control of the family budget, so it’s time to make sure you have access to all the accounts and finances;
- Place of Residence – In the UK the county council decides if they see Alzheimer’s as a medical condition or not. This is important as if your council classes it as medical, then you get substantially more benefits and help – amounting to the NHS contribution;
- Embarrassment – As the onion skins of social convention were stripped away from the person with Alzheimer’s their behaviour may seem to become more erratic, indeed also embarrassing. You need to ‘get over it’, don’t let the fear of embarrassment overly affect you or you own quality of life – visits, outings and the like;
- Tracking – get a non-intrusive tracker sorted out – people with Alzheimer’s tend to wander and get lost, this is especially the case near the beginning of the condition;
- Accept Help – Decide to accept help, you will need it and the sooner you accept this fact the better it will be. There are lots of sources of help, from day centres run by ‘Mind’, to nurses from the ‘Memory Clinic’, to carers arranged by the district council;
- Locks on Doors – You’ll need to be able to control access you rooms in your home on a micro level – ie each room. Not to lock anyone in – but to lock people out, especially from danger areas such as the kitchen and bathroom. It’s also good to get child locks on the cupboards too; and
- Hard Floors – You’re going to need hard floors – for obvious reasons – get them in as soon as you can.
Also remember that things happen in waves. Wandering may be very intense but then may stop very fast with the person with Alzheimer’s preferring not to leave the house. You’re going to have to be flexible.
This flexibility has to be built into our technical assistance too. Expecting the same requirements for each carer, and consistency over time, is just not going to happen. But from my experience we need to better support for carers.
While the carers care for the person with Alzheimer’s, we (through our technology) need to carer for the carers!