October 2020 – March 2021
Alzheimers Association had been helpful with this article highlighting the differences from the normal presentation of dementia. About Down Syndrome and Alzheimers.
Symptoms of Alzheimers in Down Syndrome
(extract taken from the above article)
In people with Down syndrome, changes in overall function, personality and behavior may be more common early signs of Alzheimer’s than memory loss and forgetfulness.
Early symptoms may include:
- Reduced interest in being sociable, conversing or expressing thoughts.
- Decreased enthusiasm for usual activities.
- Decline in ability to pay attention.
- Sadness, fearfulness or anxiety.
- Irritability, uncooperativeness or aggression.
- Restlessness or sleep disturbances.
- Seizures that begin in adulthood.
- Changes in coordination and walking.
- Increased noisiness or excitability.
With this list I noted beside it the things that were changed in Wendy with a yes or no. The only no we had and still have is no seizures.
If you have just come to this page and not yet read any previous posts you may benefit from reading – The journey to know what is going on
Baseline Abilities and Characteristics
I had begun taking notes of Wendys health early 2018 when I realized fully that with mum gone so was the finer details of Wendys health history. So without consciously calling it a baseline I noted how she was health wise when she moved in with us in 2014, how she had been over the four years with us. With so much focus having been on mum I was realizing Wendy was having a few more “health issues” but not enough to think Alzheimers at all.
After going to the GP and having to wait another six weeks before she was going to see Wendy again and somehow notice distinct changes from one visit to the next I decided I needed to establish a baseline for Wendy. Quite a few articles and websites had made mention of the importance in having a baseline of what the person with or without Alzheimers is capable of at their very best. Page 20 of this article explains it well – Aging and Down Syndrome
My concerns about Wendy and the observed changes were handwritten, mixed up notes but I decided that I needed to create a spreadsheet where all the info could be laid out in sequential order showing the decline that I was seeing in Wendys function, emotions, language, skills, behaviour etc.
I determined Wendys baseline should be upon her best years from age 25-48 then for showing the showing the current abilities and charaterisitcs I would need to go through my notes and pick out what was relevant by category but I was uncertain what they would be.
The Baseline Spreadsheet
I wanted the information to be easy for doctors to look at and interperet and for me to update quickly in a set range of criterias from Wendys best abilities in those skills to where she is now labelled by date and her age.
A structure with the right headings was required so back to searching for the most succinct list. I found this list from National Down Syndrome Society – page 15/16 has the full outline.
There is a link at the bottom of this article to a fresh spreadsheet with all the data you need in it to get going to create your own.
Function – Self Care tasks – Eating bathing, dressing, toilet, walking, grooming etc
Skills – Academic skills – chores – responsibilites around hours. Day program activiites, talents, hobbies, sports, favourite activities
Memory – learn and recall names of people, keep track of days of the week, know way around familiar areas. Recall recent past events, recall recently learned information, any particular memory talent or skills.
Behaviour – behaviours present throughout adulthood, self injury, aggresssion to others verbal or physical, self talk or imaginary friends, other quirks or rituals, any other typical pattern or triggers to bahaviours?
Language – express herself verbally to let know of wants and needs, speak in full sentences, hold a conversation, comprehension to follow verbal instructions
Personality – seek out peer relationships, was she social, well liked by others? Show a preference to routine and structure, how else describe personality
Mood – what was the mood most days, were there mood swings, ever have a psychiatris or therapist?
Even more information
I went back through my notes and filled in what she was like between 25-44 with mum and dad, then how she was from 44-48 when she was liberated by moving out of home and going to group programs, catching the Taxi and doing extra currcicular evening classes like belly dancing and yoga.
I set about noting in another note-book specifically under these catergories everything I experienced for the whole 6 weeks until the next GP appointment. I was creating a purposeful environment to help pass time and to have clear representation of how frequent occurences were, fully quantified by date and times.
I noted the hours of sleep she had, frequency of sundowning, swallowing issues, time to get dressed and incontinence.
GP Appointment
October – the week before the appointment with the GP I sent the spreadsheet through with a cover letter with an outline of observations, a couple of videos of Wendys mobility, sundowning and grumping.
At the next appointment the GP was very helpful and had already typed up a referral letter to send to the memory clinic for an assessment with a geriatrician and OT. All she could say was how compelling the information was shown in the way I had sent it to her.
Memory Clinic
November – I got a call from the Memory clinic to ask further questions and advise that the clinic was booked out for about 16 weeks and that around February they would be in contact again to set a day and time with me.
After the chat with the lady at the Memory clinic who said to me that when Downs adults who haven’t before under duress dropped to the floor crying like a toddler, then from her experience with everything else considered, they had Alzheimers.
It’s odd to type this but it was with this information I was first really able to start to accept our situation. A wise loving aunty would always say “with acceptance comes peace”. How true it is.
So I continued to document and work to adjust things for Wendy to make her life easier and less stressful. I began letting people know more that I believed she had Alzheimers and to let her just be rather than trying to correct her in the belief they were helping me to help her.
Neurologist
Wendy has a neurologist for her Dystonia. When we had the August appointment I tried to speak a bit cryptic with him about my belief Wendy had Alzheimers. (she was in the room) I got the feeling he didn’t believe me and questioned why I would even want to know as it wouldn’t change anything would it?
I was feeling down about chasing the answer with his attitude but I knew it would mentally change things for me. I would better advocate and stop trying to fix things. How true this proved to be for me.
I had realised through the process Wendy really wasn’t sleeping well and I wanted to address some things with the Neurologist so before her appointment in December I sent him the spreadsheet of her changes and video of altered mobility.
He greeted me at the door much more congenially and just keep saying that “spreadsheet was compelling, so clear”.
He was prepared to give me a referral to the Memory clinic too but I told him we were already on the waiting list for an assessment and that I had asked for a report to be sent to him.
He gave me a script for Melatonin for Wendy to try to help her settle with her sleep.
Memory Clinic
We finally got into the memory clinic in late February. Dad came to the appointment too. We had a group session where the Geriatrician and OT asked Wendy questions to which she answered very well. She spoke up about how she felt about her brain not being sensible, how she walks stupid and can’t help it, she feels like she is stuck in a hole, her wee-wee just comes out and she can’t stop it, she feels sad and doesn’t know why and more.
I was impressed to see her express herself so well and really got an idea of how aware and frustrated she is. (I did a lot of translating and redirecting her back to the topic but she did very well)
Wendy and dad were left together with the Geriatrician to do memory testing and walking.
I went with the OT to another office where she gushed about how the spreadsheet and detail was the best referral they had ever received. She had a few questions for me but basically everything else had been answered in my referral content and the updated spreadsheet I sent about three days before our appointment.
The final report takes another three weeks; allowing time for a group of clinicians to get together to discuss a client and ensure that all other avenues of issues and medications have been eliminated as a cause for symptoms seen; to agree or disagree on diagnosis.
I told the OT I had a videos of Wendy mobility to send through to aid in the assessment. Which I did send and then we spent the next three weeks sitting in a place of limbo, certain but uncertain. Unsure if some issues might still need to be pursued as separate conditions.
Diagnosis
17th March 2020
The meeting was brief and just simply “Yes Wendy, you have alzheimers like your mum did”. With heightened emotions it feels like a sledge hammer hitting you even though you were fully prepared and expecting it.
Wendy probably didn’t need to hear “like your mum” as that really brought it home emotionally for her and I’m glad I had by this stage been able to really talk to her openly about her brain and most likely she did have alzheimers like our mum did.
Hearing it said like that makes her feel sad. I just reassured her in the meeting and if it comes up at home we assure her that we will keep her safe, love her and not leave her. In true Garfield form she says as she has since the movie came out – “Pet me and feed me and never ever leave me”
We were the fourth Downs Alzheimer’s case to go through the local memory clinic so when I asked about speicific practitioners who had experience with Downs they had nothing to offer.
The following day the OT came back to me and said she realised that there are another four Downs to go through assessment soon and they probably should have a resource to start families off with. She was then able to give me a contact for an OT and a psychologist.
What a journey it has been. I expected to cry and allow myself to feel some grief here but I’ve just been busy with further simplifying Wendys life which does keep her calmer and happier.
My aim is to give her quality of life and to not burden her with doing the unnessessary, to keep her energy for enjoying life and the people she loves and who love her right back. Keeping it simple and enjoyable is the aim.
The spreadsheet
I’m not typically one for spreadsheets but we have, as you can see from above, had a brilliant response from recording and updating it. I have read other families journeys to diagnosis and some have taken a couple of years or more to get. I think nine months was a long time but in hindsight it was quick. My time note taking was well spent and rewarded.
My belief is; if practitioners asked their patients to fill in a particular form to collate the data they want to make assessments then everyone would do it given the wait periods to get in to see them. Having a structure would save everyone time.
The purpose to write this article is to let others in a similar situation know that this technique really worked well for us and if you choose to follow and use it I sincerely hope you have the results for your loved one quickly too, either way.
If you have specific questions I can be contacted via the form on the Contact Us page.
Good links
Baseline Abilities and Characteristics Spreadsheet to make your own
Dementia Australia – Down Syndrome and Alzheimers Disease
National down Syndrome Society – DS ALZ – A practical guidebook for caregivers
Dementia Blog – When dementia knocks – Louies Story
I'm lucky aren't I... 