Care Team

daisyflops22

The neurologist has submitted referrals for my LO to see a behavioral psychiatrist, a cognitive therapist and a speech therapist. Said that he has other Alzheimer's patients who have benefitted greatly from that approach. 

Anyone familiar with this team make-up or parts of it?

M1

Hi Daisy--Sounds good in theory...but could also be self-serving/profit making, generating income for each other.  Sorry to be cynical, but I'd ask to see evidence-based data (such as a randomized, controlled trial) showing that this approach has benefits.  I'm not aware of any such.

sandwichone123

Careblazers had a video recently about the value of speech therapy in improving communication. Usually I think of speech therapy as just speaking and swallowing, but this video said they also may be well-trained in communication issues, which is so often a major issues for our loved ones.

jmlarue

What stage of dementia is your LO in? I know you mentioned that he was recently diagnosed, but you didn't mention what his level of cognitive decline was at the time. I do hope you will return and post about your experiences with these referrals - what you see as improvements in your LO's behaviors and cognition as a result of the therapists he's been referred to. Was his neurologist able to define, specifically, how other patients were "greatly benefitted" by these cognitive or speech therapists?

M1

Daisy, out of my own interest, I googled "randomized controlled trials of care team interventions in Alzheimer's" last night and got a few hits.  But there's not much out there.  For example, one study of cognitive therapy in early Alzheimer's (10 visits in the home over 3 months) showed minor improvements in wellbeing for the patients and caregivers at 3 and 9 months, but nothing else.  It's pretty meager stuff.  And it was difficult to recruit for---they screened over 800 patients for the study but enrolled only about 200 (25% of those screened).

You could google the same thing about speech therapy.  I think the behavioral psychiatrist may make sense, eventually--because behavioral issues do come up for many folks, and the psychiatrists are more adept with the many medications.

Agree with other posters it does depend what stage he's in, and how you are both coping.  Wish there were really some things that could make a difference.  Good luck.

PlentyQuiet

While we were in the process of getting DH diagnosed we were sent to cognitive rehab. He hated it. The exercises just made him feel stupid when he couldn't come up with the words even after prompts. 

After the diagnosis the neurologist said cog rehab was of limited value and left it up to us to decide if we felt there was any value added. 

It was with much glee that DH tossed the exercises when we got home. 

Maybe the therapies have some value that we are foregoing, but it was not worth it for DH.

Vitruvius

DW was referred to a speech therapist in mid Stage 6. We tried one session but it did not go well. The speech therapist imagined she was going to provide DW with techniques to improve her communication. Something like that might work in earlier stages but was ridiculous for someone in the stage DW was in. It was doubly ridiculous as DW has Semantic Dementia, noted for problems with words and communication.

It made my DW very confused and depressed. On the way back from the appointment she expressed this in several ways. 

So seeing a speech therapist may work for your LO, but I decided not to go back again. The therapist called me asking for her to come back assuring me she could help DW, but I was convinced it would not help and would only distress DW.

daisyflops22

Thank you all for your thoughts and input. LO is in a mid-moderate stage, if that makes sense.  He's independent in some areas but lost or nearly lost in others. Results of the neuropsych test, which practically traumatized him, showed moderate cognitive decline. The score was 106/144.

The dr's reasoning for the speech therapist made sense to me, as someone also noted. It's about improving communication and 'finding the words.' And I agree with bringing in a psychiatrist given LO's depression and anxiety. The other.. we'll see.

Next question, a bit awkward... any experiences out there with your LO having a significant increase in their libido? Maybe it's best I ask the psychiatrist about this item. LOL

harshedbuzz

daisyflops22 wrote:

Next question, a bit awkward... any experiences out there with your LO having a significant increase in their libido? Maybe it's best I ask the psychiatrist about this item. LOL

Always best to consult the professional who sees your spouse about this. Sometimes this is associated with FTD-behavior variant which is useful to differentiate as medication can be different. 

It's not an unusual "symptom" from what I gather in other types of dementia. Many PWD have a strong emotional connection to their preferred person and this can be a way of seeking reassurance almost like shadowing.

For my dad I think it was more a function of his tendency to "time travel" back to a time when he was younger and sex was a regular part of his daily routine and things cost way less than they do now. I was sort of surprised by the interest he had because he was being treated for a recurrence of prostate cancer with androgen deprivation therapy.

HB

M1

Agree with HB on all fronts Daisy--it's not uncommon, and you absolutely should mention to his docs.  Also perfectly fine topic for these boards:  not much is off limits here, we've all seen a lot.  Worth discussing with the docs in case it becomes problematic for you, and you don't want it to lead to inappropriate disinhibited behaviors (also not uncommon).

ButterflyWings

Daisy- I agree with the others who are taking these claims of therapists’ benefits with a grain of salt. The memory issues alone, with most PWDs, suggests that trying to learn and apply new techniques is a casualty of dementia. 

And many of our LOs, like my DH, also live with anosognosia (no awareness or comprehension that they are impacted and slipping). So convincing them of the need to even try new strategies can be unlikely. 

Lastly, yes many report a phase of increased libido which can be problematic for wives especially, it seems based on the posts I’ve seen through the years. Glen Campbell’s wife reported the same in their family’s documentary on his dementia. She sought assistance from his Dr. for a tweak in his behavioral meds. I would do the same if it becomes burdensome for you, as it is a function of brain disease and decline, not increased affection or expression of “love” per se. My 2 cents. 

Glenn Campbell documentary: “I’ll Be Me” 

(about his dementia journey)

 https://m.imdb.com/title/tt2049586/