Many chronically ill and dementia patients are cared for by relatives. A US project is studying how much time and energy it actually takes to care for a sick relative. And the result can be painful for health policy.
In The Bay Area Rajiv Mehta runs a project called Atlas of Caregiving. Rajiv has for a long time been active in the field of digital health and the Quantified Self network, QS. That has made him establish many contacts in all areas of health, not least among patients and relatives. At the Quantified Self Europe conference in Amsterdam, Rajiv spoke about his project under the headline Tracking for caregiving.
Rajiv has seen a pattern: When we talk about health care – to care for someone who has a disease – we often talk only about the tip of an iceberg. We are referring to the care that takes place in a hospital or otherwise by health professionals. But most health care is managed at home, often by family members.
Compare with Sara Riggare and her thesis that one hour a year is the time that a chronically ill person meets a doctor. The remaining 8,765 hours you manage yourself.
But dementia and severely ill elderly often have oversight of home assistance or other types of public caretakers. And – not the least – help from relatives. And because health care is very different in the US than in Europe, it is very common that relatives plays a big part in this puzzle.
The starting points for the project are these:
1. For a long time, Rajiv observed that families are overwhelmed by taking care of their ill. And many times it can be hard for these people to communicate the fact that it is difficult and that caring takes a lot of time. It may not even be visible to themselves.
2. Is there anything in the knowledge on health, tracking and monitoring that the Quantified Self movement resides, that could be of help to families?
The first problem was to recruit participants. Rajiv thought that it would be suficient with twelve families in the study; this would be enough to get a manageable basis with decent variety. Patient organizations were instantly alert and asked “don’t you want more participants, we can get you any number.” But then there was silence.
One problem with recruiting relatives through patients is that the patient may think that he or she doesn’t receive that much help. It may also be a stigma to admit that you need the constant attention of a relative. And just as difficult to admit that you are very ill. Meanwhile, relatives are too busy to help to think about participating in a research project.
Finally a newsletter from the Family Caregiver Alliance gave some results and Rajiv could begin his study.
So, what was done?
Each family member / patient were studied intensively for a day and a half. The caretaker wrote down all “health events”, they were interviewed and they were equipped with various tracking tools. Among other things, the project used Narrative, the wearable camera that takes a photo every half minute, and the activity bracelet Empatica E4 (which is approved in the US for medical research). Moreover, Rajiv and his team installed several sensors in the subjects’ homes, all to get as complete a picture as possible.
“In this situation, we look at everything that we can track, but so far it is only theoretically interesting. We do not yet know what is interesting to track”, says Rajiv Mehta.
In the written diary the caretaking relative made notes in a form. This was asked for:
- How long
- What did you do
- If other persons were involved (eg health professionals)
- How large degree of help was needed (eg, ‘lifted mom out of the wheelchair’)
- Level of cooperation (eg, ‘mom protested wildly’)
- Stress level
Self-monitoring could later be confirmed or corrected using tracking tools. Empatica gave some help with stress levels, but participants could sometimes indicate very high levels of stress themselves – something that could not be confirmed with the measuring tool. Above all, the pretty intense coverage could be finetuned with the help of Narrative. The photo stream also gave a good basis in the interviews with the caretaker. Photos made it easier to talk about events and dig further into what different situations meant to the participant.
“Extracting and showing ‘rich data’ is an eye-opener for people”, says Rajiv. “They often have no idea how much time they spend on taking care of their ill.”
The project Atlas of Caregiving is still in progress, not least in its analysis phase. Therefore, Rajiv Mehta is careful not to draw any conclusions from what he has seen so far. But he believes that the results of this study also can become an eye opener for those involved in the policies that shape our public health care.
“We build our policies on the data we have today. If we get richer data – what happens? When one realizes that the patient needs 40 hours instead of 20? It’s a challenge for the whole society.”