By this time, many informal carers are overburdened, so admission to a care home often soon follows.
Balvert shows that clear information, guidance and practical support are needed precisely in the period around the diagnosis. When people receive support earlier, there is room to organise appropriate help together. This may prevent overburdening later on.
Experience more important than amount of care
A striking conclusion from the study is that the severity of informal care is not mainly determined by the number of care tasks or the number of hours of care per day. The decisive factor is how informal carers experience care.
Positive experiences - such as doing something meaningful together or not feeling alone - outweigh practical factors. Support that ties in with daily life and what people find important therefore proves most effective.
Effects not always visible in figures
Many forms of support are perceived by participants as pleasant and valuable. Yet their effects are not always easy to measure in questionnaires or statistics. The impact is often in subtle but important changes in daily life: a better mutual relationship, more connectedness or more social contact.
According to Balvert, this calls for a different way of looking at success in healthcare. Not only measurable outcomes, but also personal experiences and and what people themselves perceive as important should be taken into account.
No standard solution
"Good dementia support should be personal, timely and flexible. What works differs per person, per stage of the disease and per family situation," Balvert said.
This means that the solution lies not only in new interventions, but rather in better recognising and strengthening existing forms of support. By being in the picture earlier and connecting to what people need themselves, care can be organised in a more person-centred way - possibly resulting in less overburdening and postponement of admission.
Balvert thus underlines the social importance of accessible, appropriate support in dementia: not only to alleviate care, but especially to continue to enable meaningful moments.
Balvert will defend her thesis on Wednesday 4 March in the Auditorium of Vrije Universiteit Amsterdam.