A study funded by Alzheimer’s Australia and undertaken by researchers from La Trobe University looked at the experiences of 25 carers of elderly family members who have the degenerative brain disease.
‘What usually happens with dementia – whether someone is living alone, with someone else or in a nursing home – is that a son, daughter or other family member becomes the primary carer,’ said Dr Les Fitzgerald, lead author of the study and acting Head of Nursing & Midwifery at La Trobe Rural Health School. ‘They are the ones who call around regularly and do the bulk of the caring.
‘This also means that they become heavily involved in care when their family member is hospitalised with, for instance, a broken hip.’
Dr Fitzgerald and his team wanted to know how well carers thought hospitals professionals prepared them for the ongoing care of their family member after discharge.
‘The critical issue that many of the carers we interviewed had was that they were not necessarily involved in planning for post-hospital care. They were often unaware of the existence of a discharge plan.’
Dr Fitzgerald said this complicated care once a patient left hospital.
‘For instance there were several examples of hospital staff not following routines that carers had set up around managing incontinence. Family carers often had spent a lot of time trying to establish routines around going to the bathroom at specific times. In hospital those routines were often not being followed and as a result incontinence became a problem for the family carer to manage after the person with dementia was discharged.
‘Often carers were raising these kinds of issues with hospital staff. But because of the number of staff members involved in the patient’s care and lack of communication between everyone involved, those issues remained unresolved.’
Another problem was that carers found it difficult to keep track of recommendations from different specialists who might see a patient.
‘A discharge plan for a sixteen year old is probably going to be much simpler than that of a frail elderly person suffering from dementia and using my previous example, with a hip repair. A carer has to be knowledgeable about a range of medications and their side effects, day to day care routines as well as exercise regimes needed to make a full recovery.
‘Carers are extremely committed people who want to know what they can and need do to help their family member have a better quality of life but to do this they need to be more involved in the planning of in hospital care as well as better informed about post hospital care.’
Overall, Dr Fitzgerald and his team are recommending that discharge planning for family carers of people with dementia can still be improved. The major recommendation is to involve the family carer more in the plan of care.
‘Most hospitals will say that they already have systematic approaches to creating and implementing discharge plans, and we are certainly not trying to say that that the issues we talk about in this report equal terrible care. What we are saying is that we have found a number of cases in which discharge plans could have been better.
‘We further suggest that, when it comes to treatment and discharge plans, hospitals are good at treating the primary diagnosis, such as the fractured hip. What our study has identified is that managing the complicating factor of dementia on top of the primary admission diagnosis is difficult and family carers can assist. We are asking hospitals to consider that a key element in creating discharge plans for these patients is involvement of the family carer.’
Zerin Knight, Ph (03) 5444 7375 F (03) 5444 7526 M 0428 463 161 E [email protected]
Tom O’Callaghan, Ph (03) 5444 7415 F (03) 5444 7526 M 0408 900 469 E [email protected]