I started blogging to record my world. My blog now also tries to highlight the human and personal costs of a diagnosis of dementia, the significant financial impact to individuals and families, and responds to the current status of age appropriate resources and services, or lack thereof, for people diagnosed with younger onset dementia and their families and extended networks. Some of the things I would like to see are increased and improved GP education of dementia to ensure earlier detection and diagnosis and/or referral to medical specialists; increased Practice Nurse training in detection and management of dementia; changes to Accreditation Standards in residential care to properly accommodate people with younger onset dementia; a much stronger focus on psychosocial care and therapies and non pharmacological interventions; authentic brain injury rehabilitation for people with dementia particularly in the early stages; improved general health care, including education about diet and exercise specific to dementia; NeuroPhysiotherapy; Neuro plasticity [brain] training; holistic health options, including Transcendental Meditation, supplements and hypnosis; funding for improved service provision; better education of service providers and their staff; age appropriate in home services, respite and residential care for people with younger onset dementia; increased clinical research funding, new funding for research into non pharmacological interventions and for improved quality of life outcomes for people with dementia; non means tested carer allowance, and access to assisted technology.
I’ve been talking about what I currently have seen as the implications of early versus delayed diagnosis of dementia. I want to also talk about improving quality of life, increasing opportunities for social engagement, improving residential, in home and respite care, increasing awareness and education of service providers and the community, and at some stage I want to look at the insurance industry as it currently discriminates against people with dementia. There is a thin veil between people with dementia being treated with dignity or being treated like morons. For me, treating the symptoms in the early stages of dementia, as the gateway to supporting disabilities, not managing them in ways that restrict or hinder, and managing emotional changes with counselling and positive engagement, rather than with drugs, have become paramount to my well being and perceived longevity. It is people with their own stories who have the most chance of impacting change. As a person living with dementia, and a person who has nursed in the industry, I believe I am in a unique position to critique the service provision of, and funding for, people with dementia and their families. This by no means indicates I have all the answers, or even all the questions, and I love to hear from others about they think, about what they need, or about how it has been, or still is for them.
Speaking out has occasionally caused me some personal grief and hurt. Yesterday I tried to highlight the human cost of dementia, in a forum that was deciding how to spend the funding package to become available as of July 1, where I had mostly heard about spending for professionals and carers, with minimal emphasis on actually improving the outcomes for people living with dementia. Sadly, a person who has been a primary carer for an older parent chose to publicly slander me, and it appeared to me and others that she publicly accused me (but not to my face) of Ageism as my presentation highlighted the fear I felt about having NO other option than an AGED care facility to go to if I needed residential care. It is obvious she has her own agenda and biases, and her ire has done nothing more than motivate me to speak out more often, to ensure the VOICE of those people living with dementia who can’t or don’t want to speak out, are heard. I am not at all disrespectful of older people, in fact, the exact opposite and my advocacy is not just for dementia care, but to improve aged care. My father in law was in residential aged care before he died recently, and his experience of entering aged care was not much different to my aversion to the thought of being in aged care. There is a very personal cost to speaking out, well, after a diagnosis of dementia as my friends Richard Taylor and Christine and others like them around the world testify to. What we can’t do alone, perhaps we can do together.
I agree with all you have listed above, Kate, and together we can make a huge difference.
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Let’s hope so x
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Hello, Abraham Lincoln was right you know, “you can please some of the people all of the time, all of the people some of the time, but you can’t please all the people all the time.”
If some folks don’t get pissed off at you once in a while you are probably not being as truthful as you need/want to be. I could offer you hundreds of platitudes but I too know from personal experience when you believe your own intentions are pure as the freshly fallen snow, when even one person comes along and pees on them we are offended. Try not to be.
Richard
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As far as I know the only places for people with early onset dementia if they cannot live at home are care homes for the elderly. Now while the care needed for young people may be the same as for the elderly, the activities on offer are unlikely to meet younger people’s needs. EG current musical offerings are usually war time songs which are great for the over 70’s but have less resonance for people who are 40-60. Equally reminiscence sessions are targeted at older people. This may seem a trivial point but given the low budgets available for care home activities it would affect the quality of life of people with early onset dementia.
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Hi Kate –
I am really sorry you had a bad experience today, and I feel
that I should have spoken out earlier now.
I have thought whilst reading your recent blogs that they did sound
“Ageist” – by implying that old people didn’t require as much as young people – although you didn’t specify what those requirements were.
But I really don’t want to be continually picking on your work, so I
decided to hold my tongue.
Now I wish I had said something, so you might have been alerted.
I am sure you don’t mean to be ageist, but that is how your work might read I’m afraid.
Maybe you could explain what younger people require that older ones don’t?
Then either you might realise the age is not the issue, but rather
flexibility for individual needs – or, those who think you are being “Ageist” will understand what you mean and stop being offended
Apologetically your loving friend
Sally.
( I originally wrote this off blog to Kate, so as not to offend, but she has given me permission to out it here.)
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For a change, it wasn’t anything on my blog actually, but thanks for alerting me to it being misread there, I had probably not thought about that aspect even. And I will think more about being specific to the needs or younger vs older.
Pete is another matter, he is so lovingly protective me he thinks almost everyone who says anything against me or my opinion is the bogey man – he is my one true sycophant!! Like his mum was to his drawing and painting!! And I love him for it too, we all need at least one person who loves us like this. xx
And I also wrote via email, please don’t hold back on the blog unless you really want to, it does make it a very rich ‘forum’…
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Kate I sort of agree with your blogg. However I do strongly believe that all of us have our agend/personal experiences and passions about how we came to our beliefs.
and what we have lived through our experiences with other people living in “dementia’s.” Understanding that when Dementia finally overtakes us, that then nothing can reverse or change our destiny.”Dementia” for us .. We are not living in “demtnia” YET.. we are livinng in the early stage/early symptons that are effecting us all differently, depending which part of our brains the plaques/tangles etc have disconnected and kiiled off our nerve.cells. when we reach “Demetnia” we will be living IT.. or ? alive in spirit, witout our ability to do what we are all able to achieve in our present early stages of this disease. When we speak out OUR strong beliefs, our perosnal agenderss/convictions of what we believe is truth and factual… We always need to use our wisdom towards those that are hearing or “enduring” our words. They like that lady that rebuked you. obviously had her ‘pain,” her beliefs her perhaps convictions about how she perceved it all?
People without knowlege about thei disease are listening to us… We need to clarify (I believe) we have not yet “dementia” as it is clearly defined as a medical condition.. We have early symptons and that is the reason we are able to still function on different levels that our evolving symptons are taking us..
some evolve quite quickly.. Others like ourselves are more fortunate that ours is a slower progress… Whatever” or however we choose to explain it differently, but needs more clarification for education..
Differnt types decline quicker.. thats the facts and truths. I shared company last week with a 42yr old only 12 mths and her decline has robbed her of her speech her body functions and aged her dramatically. She has lost her husband and her children.. Now if she was in an audience where she was hearing someone saying that I have ‘demetnia” and this is what you should be doing etc.. she may attach you physically.. Hers another type but more radical, and aggressive. she is entering into “Dementia” as it is mediacally understood.As my Neurologist claims when :dementia blossoms then it is too late for any thing to revfers it. and rug trials are not successul..
Hence why he is using me for his drug tials next week.. as he needs people with evolving symptons NOT already dementia.
People I beleive can only truly understand dementia by us infroming them as it is… when we say I am a person with Dementia ?? Well we are not . were progressing towards that fatal time when Nothing we do can change it and all visabiliy of the disease will be so..
I do aggree in those early stages yes we can work at prolonging the progression, as were all doing .. In our own ways. and they are working for us individually. I think when another person pust their strong points of views accross to people enduring their loss of their loved one,? or the person in their early stages but declining rapidly, as so many I know. Hearing peple lik e us that are not enduring difficult dementia symptons can be extremly hurtful. and confusing.. We have live somthing to understand it fully .
the age issue. I agree with, except now I am 66yrs from 62 diagnosed . so now I cant be too preachy about this age thingi However I have been going into Dementia care facilites asking their managment what care/treatment/and envioroment have they for me IF I had to be moved in ? next year. would I be arround people similar age? same sex? would I feel safe and secure in an envioroment with other dementia people with different types of behaviour issues.
I have been disgusted with how they have responded. the Casino Facility a new “Dementia wing ” b almost completed.. none of the requested trquiremnts given… In that facility dementtia all ages combnined with all sex’s combined with dsiabilities.. all in together in a fifteen room block OOH how delightful I responded.. Im sure I challenged the manager this envioroment would give you joy to live in or your daughter etc. I the wrote to the dementia lady that had built this wing “challenged her thoughts and planning of this “institution”??? I never heard a word back from her.. so Iam pursuing after her through a higher authoriyt I met in NSW.. so we are right in, not age discrimination as such, but our surroundings.
sorry for the long speel but have email now back in perth so you got the LOT. didnt mean offence but I have also my strong thoughts/agendes and passions towards changing ,and incorrect dementia explanations. through lack of us with the diangosis not explaining Dementia correctly specifically that were in the symptons not the Dementia yet. about the disease Carol x
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with love and hugs always dear friend(s), and thank you for sharing your very important and valid points of view. Well done too with standing up for the new Dementia Wing!! keep up the good fight. xox
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I’m also not sure I completely agree with your version of when we have dementia. To me it is no different to a case of measles (mild or otherwise) or cancer, you either have been diagnosed with it, or you haven’t… just a thought. If you have other ways for me to see your point of view, please share. with love always xoxo
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Last blogg Kate. 🙂 I guess due to the support groups I particiapate in NSW and Perth Im mixing with those your age and younger that have transitioned into “Dementia,” as the medical dfiinition describes. Like you said about cancer etc.. I see dementia diagnosis as a pre- dementia. just like I have three cancers that were cancers but early diagnosis.. cut out cut off ceased them killing me… but had I not found them slowley they would have evolved into full blow cancer and killed me.
“Dementia” is evolving. brain cells being slowely or quickly been killed off… which eventuall leads to a full blow dementia.
when the stage of dementia occurs then one loses their ability to speak sentences, and rememember most of the world arround them thier eyes look out but their minds have becom empty and lost. they cannot remember ow to dress make a cup of tea etc etc.. you know all this
they lose the the ability to communicate even one sentence.
I accept our diagnosis of a dementia… but until were at that stage in it that causes these dissabilites, then I believe our expression about our diangosis should clarify our conditon more accurately
I elive that we shojuld be explaining more of that prgressive transition to people for them to really understand. I know for my family, they expected me to be behaving and living out the symptons that those they have known with dementia in the fullness of it , and as the dictionary word discribes it to be.
NO wonder there is confusion about it.
After I educated my family and friends in more clarity about the disease, they all accept my changes and personality issues ie- Frontotemporal lobe degeneration. Early symptons of ALZ”s disease.that in the eraly stages I am able to contiue functioning, but yes I have had huge issues in the changes that relate to the areas’ f my brain that have been effected.
I explainded about the Amyloid Plaques.. about the Tau tangles etc.. that were weaving bout over my brain killing off brian skill as they will.
BUT as yet they hopefully have a long time before they consumme every area which will lead me into a Dementia of known perceptions.
a ceasing of my ability to mentally of physically function.
Explaining my changes my dissbilites that I cannot change. and now have to accept myself. has acctually helped them to accept and understand me easier. and not take my withdrawn personlitly personally towards themn their lack of education. How the diseas works within our brains.
In my support group in WA. Early onsets, with the ecpetion of us in it still.
as Im still function ing .. are only accepted to remain in that group whilst we are in the early stagesof the disease and can still participate meaningfully.
Once dementia begins to effect our participation abilites in that group we are transioined “OUT” when the demenita symptons have evolved into Dementia where their brian is begining to cease functioning.
this is tragic for them, as they have been in this group since daignosed. they have had a 12 mth notice about their having to leave the group.
that due to the decline they can no longer particiapte in this early onset early stages group. SAD AS EH? Were returning next week with some positves for them towards chan ges for these dear folk.. NOT to be OUTED like wasted spaces. as some of the care’s advised amidst our group.
.
Even people early diagnosed and in their early stages have little tollerence for those who have lost themselves into dementia state.
Only recently have I wanted to be arround them also.
being confronted in my future being as them.
I now have more empathy with them, as symptons arrise with in me more oabvious. The NSW Dementia Outreach do not have these same porblems. due to not having the same supported edcuational groups that require trained staff for the two goups every month “funding” lack.
I dont view any of the people at conventions to have the dissabilites of how I perceive A person with demntia… they have been diagnosied yes but their journey into their dissabilites is apparently quite a period away.
due to how they are still able to function.
All other diseases we’re dignosed with, evolves as you said, but with dementia it is the brain and the pathway leading into “dementia” is when the brain is killed off slowely ? or quickly which causes the Dementia
which means our minds and brain abilites can no longer function.. I guess what Im am trying to say is that public speaking towards more clarification of education. is so needed. This would help people to understand in more clarrity. People can look at us speaking.. wihtout any real dissabilites that prevent us from achiving this.
then meet a person also saying I have dementia. LIKE my daughter in laws school friend just 42yrs old that after 12 mths her diagnosis she lives every area out of the definning word “Demetnia”. Of course confusion will be.
Thats all Im trying to get accross… if we want “stigma’s to be dealt with then we are the voices yes, to educate. about the differences of people diagnosed with dementia’s.
At conventions PWD diagnosis should be first explainings not only the type BUTall about it and its future effects it will have leading into a “dementia” that is diffined medically .
Then how the early stages of it allows us to be able to achive the functional brain skills that were still able… showing them that yes a diagnosis of Dementia has been given BUT the progression into the final stages of dementia is when the brain dies off over and within the brain, which then causes “dementia as it perceived ,that then our bains cease to be able to function.
After we have explainded my Dementia’s diagnosis this way to family and friends,they can now understand and accept the progression, and my personal dementia changes and diifculties with so much more acceptance and underastanding.
this is where i see you as being a good advocate in your speaking at all these different events. My last blogg though Kate as I believe I must be one of those that offended you… didnt mean to, but I also have struggled along this confusing journey trying to get people to understand and accept me.
to stop putting my disease in a box. so now I am as passionate as you are, but differenty. I desperately desire for people to understand dementia to be clearly educated about it. so your speaking out twards this clarity is not somthing I am against ever. Were so blessed that our mental abilites are remaining . unlike my many lovely friends that have lost that ability.
to speak out anything on any normal level.
This is all I can say,to try to help you to understand my beliefs,and strong evaluations about this disease. Through my own personal joureny in it my rearch, and others who are furter along in the jouney in their experience All from the nuicance badgerer. NOW”silent one” Carol.x
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thanks darling one, still not sure I fully understand, but I suspect that is some of the processing/comprehension disabilities that I now have! xox
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yes, you keep going and yelling as loudly as you can. Voices like yours are precious, full of knowledge and full of experience, we need you and we need to support you.
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