"Did I make the right decision?" : the difficult and unpredictable journey of being a surrogate decision maker for a person living with dementia

Many people living with dementia eventually lose the capacity to make their own decisions and will rely on another person" a surrogate decision maker" to make decisions on their behalf. It is important" especially with the increasing prevalence of dementia" that the role of surrogate decision maker is understood and supported. This qualitative study explored the experiences of 34 surrogate decision makers of persons living with dementia in Australia. Face-to-face and telephone interviews were conducted over six months in 2014. Five themes were identified: becoming the only" or main" surrogate decision maker; growing into the role of surrogate decision maker; dealing with the stress of making decisions; having to challenge healthcare professionals; and getting support" or not" from family members. An overarching construct tying the themes together is the description of the participants' experience as being on a difficult and unpredictable journey. Healthcare professionals can provide support by acting as empathic guides on this journey.