Just a question...

[lacks information]

My father was diagnosed with mixed dementia in May 2019. I took a month off work to absorb and come to terms with the diagnosis. I am angry about the lack of information on what to expect when going through this terrible disease from NHS staff and also the medications side effects. Do you also find stop gaps along the way? I want to raise awareness in the world about this condition and help others along their path. Medics prescribe a pill but do not follow up the patient in memory clinics here in the my area for months not weeks! Resulting in as I understand, many patients having other problems due to the medications prescribed and in some instances underlying medical conditions. I am crying out from my heart to do something more! Please support me by telling me your experiences so I can make the dementia world a more engaging and knowledgeable and most of all supporting place to be. Together we are strong!

 

[karaokePete]

Hello and welcome to the forum @lacks information.

I have already given a brief reply to your other post.

I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done. There is also a Dementia Guide in the list.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.

 

[canary]

The same thing happened to me @lacks information . Mum was diagnosed with Alzheimers in the memory clinic, then there was a couple of appointments because mum had heart problems and they didnt want to use donepezil, so they tried riverstigmine. Mum had problems with it, though, so it was discontinued and after her heart medication was changed she was started on donepezil and never saw the memory clinic again - she was discharged back to the GP and I came out of the consulting room with a fist-full of leaflets.

Fortunataly one of the leaflets was about the Alzheimers Society, so I found my way here and have found an extremely knowledgable and supportive group.

 

[Hazara8]

My father was diagnosed with mixed dementia in May 2019. I took a month off work to absorb and come to terms with the diagnosis. I am angry about the lack of information on what to expect when going through this terrible disease from NHS staff and also the medications side effects. Do you also find stop gaps along the way? I want to raise awareness in the world about this condition and help others along their path. Medics prescribe a pill but do not follow up the patient in memory clinics here in the my area for months not weeks! Resulting in as I understand, many patients having other problems due to the medications prescribed and in some instances underlying medical conditions. I am crying out from my heart to do something more! Please support me by telling me your experiences so I can make the dementia world a more engaging and knowledgeable and most of all supporting place to be. Together we are strong!

This is a truly vast and extremely challenging area in respect of dementia as a whole. The important " technical/ practicable" elements ( Power of Attorney, funding in Care, et al) may be located here and also the direct personal experiences in relation to same.

What is perhaps not always addressed or indeed really understood, is the fundamental RIGHT of a person living with dementia in whatever form, to be seen precisely and deeply as the person they are, as the human being they are and thus deserved of all the values we hold dear in the civilized world when ' normality ' reigns. Because dementia separates psychologically - places the one living with dementia on the other side of the cognitive wall, whether in a social or specific relationship sense - that ' right ' which demands intense awareness and considered application of everything a Carer might say or do in the role of caring, can become shrouded in all manner of pressures and sometimes simply confusion. What is sometimes overlooked, is that every single individual who is living with this disease, has a specific history, specific likes, dislikes, a life before dementia. The trick -- and it is a very challenging one -- is to see the person as they ARE and NOT what they were, yet to relate to WHAT THEY WERE as the essence of the ongoing relationship. In effect, you address and respect the 'dementia person' before you, in being wholly aware of the behaviour, however contradictory or strange or indeed hostile, and realized that this is NOT the person, the individual, the human being. Like a small child which is totally vulnerable and crying out, is not admonished for that, so with the adult living with dementia. All of this is not generally contemplated either in the doctor's surgery nor perhaps within the family group, because daily life goes on as it has to.

The shining light which provides encouragement through evidential accounts, can be found here. Often painfully told and often with heartbreaking truth, nevertheless such accounts outweigh theoretical or speculative debate because they are real, factual, have no agenda. The focus on Covid-19 and the very obvious ramifications across societies worldwide, is self explanatory.

Dementia in a loved one requires equal focus. But, alas, is most certainly not self- explanatory.

With good wishes.