When a loved relative is suffering with Alzheimer's disease it can be extremely difficult for all involved.
Initial worries and minor concerns can give way to pressing problems as the disease progresses, especially as the effort of supporting a relative takes its toll on those who provide the care.
Decision making is especially difficult as it is frequently undertaken in the context of a crisis and brings together people with very different points of view, experience and often an equal right to be heard.
One of the hardest decisions to make concerns the timing of moving a relative into a care facility.
It can sometimes be very beneficial to have the advantages of supervised care, company, activity and regular meals but this must be balanced against the benefits of independence, privacy and remaining in a known community. Similarly the perceived harms such as falls, fires and neglect must be balanced against the stress of moving, increased risk of friction within the home and costs.
We discussed this thorny issue with Dr. Matthew Croucher, Consultant Psychiatrist of Old Age in Christchurch:
"..the determination of where people do “better” is completely individualised and is not solely based on clinical criteria, but also on very personal ones. It is, in short, a tricky ethical question."
There is no hard and fast published evidence to help guide decisions, though there are "...well documented harms when people move into care."
Overall, what works best is a sober and collaborative decision weighing up the pros and cons of each option, preferably including all stakeholders.
What are the harms to the patient and other key stakeholders that would be better mitigated if the patient was in care?
What are the benefits that would be better accrued if the patient was in care?
What are the harms that she or others are experiencing or might face in future if the patient stays at home?
What are the benefits she and others are enjoying from the patient being at home?
What were the patient's prior wishes, or if these are not known, what is known about the values the patient held from which the patient's wishes might be expected to have arisen?
Which Way? Simon Harrod