Help Wanted Please!! (Poor awareness and Stigma- Early Onset Dementia)

[Pippa5678]

Hi everyone,

I'm a student occupational therapist. I'm currently studying about Early Onset Dementia and the poor awareness that is associated.

I'm writing on here as I would like to gain a greater insight into the lack of awareness of early onset dementia and how this affects individuals diagnosed with early onset dementia and their carers/families.

Amy comments would be much appreciated.

Thankyou!

 

[bmw777]

dear pippa .
i think there is no awareness from doctors etc about early onset dementia ..
doctors seem to pass it off as stress or just old age , until has dementia it is so obvious even a grand child will know something is wrong ..

in my own situation i never knew what dementia was ... my dad passed away 10 years ago after having a series of strokes .. but after reading on this forum he must of had vascular dementia , as he shuffled when he walked , fell over etc etc ..

mum has been diagnosed with dementia about 3 years ago , but with hindsight it was probably 10 years at least ..

so unless you have knowledge of dementia , how are you supposed to know , especially as doctors dont seem to know , until it is as obvious as the nose on your face !!

 

[chrisuz]

I believe that attention needs to be paid to difference between the needs of the carer and sufferer who share ahome and those who are alone and cared for externally. Both these situations have challenges for both carer and patient but they are different. Unfortunately with early onset dementia, in our case bv FTD in the late 40's, the carer can feel they are being viewed with sceptism by all people they speak to, whether they be professionals or friends and extended family. They may be accused of having a negative motivation for reporting the observations they see. They may even be perceived as being the cause of the problem, and as the sufferer has no insight - a symptom of dementia - the carer who needs help can feel accused and judged. We were in this situation for 10 years, and even now with a DX of bvFTd that attitude can still reappear. My biggest gripe is that given the choice to believe I am doing my best, or that for some reason I am manipulating the sitution, the default conclusion should be the former unless proved otherwise. It is hard enough to have an evil disease steal the hopes and dreams you had for your future, without being treated as if your every opinion is suspect. Dementia is a horrific DX for anyone, but early onset attacks people who would have expected to be in the prime of life, who will be working and maybe still supporting children, and entire families are damaged and traumatised.

 

[Sue J]

I have no diagnosis yet but have been suffering severe symptoms for four years. I have, for the last year a GP who is listening to me and doing her best to investigate the causes of my symptoms given that most of the time it is difficult to talk about what is happening because of the nature of the symptoms. Other support is non existent in my area - I, unlike a lot of sufferers, have an awareness of what is happening to me and to say my life has changed irrevocably is an understatement.

Dementia is a horrific DX for anyone, but early onset attacks people who would have expected to be in the prime of life, who will be working and maybe still supporting children, and entire families are damaged and traumatised

Yes, in my moments of lucidity, I am aware of the damage and trauma that my family are suffering which could be greatly reduced and helped if proper help, diagnosis and support were in place. I am no longer the person they knew, yet I am still me. A way must be found to identify and help support suffferers and their families and carers.

I have often felt there should be a questionairre that GPs could give to patients or their worried relatives so that one or two people who know the sufferer could write down aspects of behaviour that has become abnormal or worrying to enable the GP to get another perspective. It is unreasonable to expect GPs who may not know the patient very well and who they only see for a brief appointment to get a full picture of what is happening. Instead, all the onus is on the families, carers (in my case myself - because of family denial) to battle with the health and social care system at a time when they need the health and social care system to be proactive for them. Trauma and damage has knock on effects. I have never seen or been assessed by an OT yet my functional abilities have changed immensly.

Wish you well in your studies and hope it leads to better understanding for all sufferers.
Sue