I write this on behalf of my son whose wife Jodie developed Dementia/Alzheimer’s in her late 40’s after being told her symptoms were menopausal.
Sadly pathology, brain scans and a battery of other testing proved otherwise and we set out on a road thwart with obstacles, joy, discovery, wonder, puzzlement, unbelievable sadness and a whole new learning for all concerned.
A complete new schedule and alteration to everyday living needed putting in place. Family and friends sent out support signals and each and every “carer” put their special skills into place. The willingness was astounding. I guess at that stage we all felt we could “do this alone” but it takes endless patience and understanding, plus a super sense of humour to carry on.
It is amazing how such a tragedy as this binds family and friends together and more often brings out the best in people. It is surprising how many new skills have been learnt. Observation of the patient we thought we knew so well brings about such a different picture. The whole perception from “self” to “them” becomes all important. The focus changes to their needs and their family’s needs.
Whilst not forgetting the patient, remembering that the family “in their fear and bewilderment” are also coming to terms with this trauma and will need extra care and concern. We were extremely fortunate in that the geriatrician who delivered the diagnosis was gentle yet direct and caring. From this time we received input and help from Alzheimer’s Australia, Dementia Behaviour Management Advisory Services and Community Based Support, to name a few. However, as with all diseases there are differences.
We generally think of Dementia as an older person’s disease and support and attention is often based in this area. There is greater need for the provision of residential care for the younger patient and research funding for the prevention, or early intervention of the increasing dementia incidence. Specific Government funding should be a top priority in health budgets.
Overall funding to health appears to find its way into “the most popularly” publicised areas whereas Dementia, because of its increasing occurrence, requires precise funding for an overall plan to be developed. Dementia is a frightening and complex disorder and greater public education should be encouraged. Knowledge and understanding are our defence against complacency. Public awareness is of great value.
Let’s not fight dementia, let’s conquer it.
Dot Burleigh on behalf of Andrew Burleigh.