I am husband to a PWD who was diagnosed in Nov 2021 with Young Onset Dementai after around 5 years of being told that diagnosis was "performed by elimination". After eliminating all normal female possibilities for a person aged 45 and above, they started looking at Dementia, which took another 2 years.
Following diagnosis, Cognitive Stimulation Therapy (CST) was offered and my wife attended that. Thereafter, 6 months of MCST (Maintenance CST) was offered run by Age-UK in Worcester. Both were very good. At the end of MCST, we (the carers of PWDs) asked Age-UK Worcester if they would consider extending the group, at any cost (we saw the value) and we paid £5 for a 2 hour session run by them. During these sessions, we, the 6 carers of the inital group of PWDs went for coffee and a chat. We thank Age-UK Worcester for running these session, which they have limited to 6 months after MCST.
Subsequently, we have formed opinions about the important of education and "relevant" support to Carers, which does not generally happen at the moment. The amount and relevance of education and support will make the most impact on quality of life at late stage Dementia, we think. There are very good examples of what we do not have in the UK, on YouTube, from other geographies such as Canada, Australia and USA (although it must be said that one still has to intelligently interpret anything on such a public domain).
Now at later stages of dementias, some of the group meet for coffee on their own, we have a WhatsApp group and each do try different ways to muddle along but are feeling that late stage Dementia in the UK is either a case of PWDs going to a Care Home or DIY care. Things could be so much better and I am trying several avenues to participate in positive influencing of Education for Carers in late stage Dementia.
Following diagnosis, Cognitive Stimulation Therapy (CST) was offered and my wife attended that. Thereafter, 6 months of MCST (Maintenance CST) was offered run by Age-UK in Worcester. Both were very good. At the end of MCST, we (the carers of PWDs) asked Age-UK Worcester if they would consider extending the group, at any cost (we saw the value) and we paid £5 for a 2 hour session run by them. During these sessions, we, the 6 carers of the inital group of PWDs went for coffee and a chat. We thank Age-UK Worcester for running these session, which they have limited to 6 months after MCST.
Subsequently, we have formed opinions about the important of education and "relevant" support to Carers, which does not generally happen at the moment. The amount and relevance of education and support will make the most impact on quality of life at late stage Dementia, we think. There are very good examples of what we do not have in the UK, on YouTube, from other geographies such as Canada, Australia and USA (although it must be said that one still has to intelligently interpret anything on such a public domain).
Now at later stages of dementias, some of the group meet for coffee on their own, we have a WhatsApp group and each do try different ways to muddle along but are feeling that late stage Dementia in the UK is either a case of PWDs going to a Care Home or DIY care. Things could be so much better and I am trying several avenues to participate in positive influencing of Education for Carers in late stage Dementia.