For Imelda, having appropriate respite care for her husband, Graham, has made a world of difference. #ItStartsWithYou
“There was a crucial part of our community by whom we were let down. It wasn’t until we had a magnificent experience of this community working with our needs that I realised how urgently change is needed. Respite care givers urgently need training in providing appropriate activities to engage people living with young onset dementia.
In the later stages of my caring for Graham at home, neither respite care givers nor day care staff were able to engage his interest and distract him from his extreme separation anxiety.
An activity we enjoyed together, a swim in the local pool was crucial to my well being: it was my favourite exercise. However, Graham forgot almost overnight how to swim, so this was no longer a safe activity. As no home visiting carers had been able to engage Graham in any suitable activity without his becoming agitated and aggressive, I couldn’t leave him at all – I was becoming a prisoner of Alzheimer’s Disease … until a very positive encounter and an example of truly excellent activity intervention.
We met with a lovely respite care giver, Phillip, who would meet us once a week at the pool, get Graham ready to go in the water and then take him into the shallow, heated pool for his “training”. Graham called Philip his swimming coach; he would stand at the side of the pool as Graham walked or waded up and down, calling out “well done, Graham. Come on, one more lap!”
After his session, Phillip would take Graham to the change rooms, shower and change him and then to the pool café; I would meet up with them after my vigorous exercise; they would be sitting there enjoying coffee and having a chat, with Phillip commending Graham on how well he was going with his training. The result of this whole solution was beyond price – I had my much needed stress relief and Graham was experiencing a sense of pride in his achievement.
If the community provides respite carers who can engage these beautiful young people in activities which are appropriate to their interest and abilities, this will transform their journey and allow their full-time care givers much needed respite.”
Hi Norma, There is a strong genetic link for a rare type of Alzheimer’s disease which usually begins before the person has turned 65 years of age. Dementia is caused by a number of disease processes and is so common that having one or two close relatives with dementia is not by itself evidence of a genetic link. It is essential that a medical practitioner does a detailed family medical history including what is known about the age of onset and whether the diagnosis of Alzheimer’s was certain. This will assist with an assessment of the level of risk for other family members and indicate whether a referral to a medical specialist and further investigations, such genetic testing, are warranted. Please call the National Dementia Helpline on 1800 100 500 (during business hours) if you wish to discuss this further and read our help sheet about Genetics and Dementia here Thanks, The Dementia Daily Team
Question : If my father his sister & his two brothers died of Alzheimer's, what are the chances of myself or my children getting Alzheimer's.