Roon on dementia (or is this dementia on Roon?)

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So madame was diagnosed with dementia with Lewy Bodies (LBD) a while back and surprisingly (or perhaps not) Roon has been playing a large positive influence during her decline.

Perhaps a small background, she is the musician, I am the technician. Married the drummer in her first rock band. When we met she was deep into early music. She resisted ‘going digital’ as for her music was always analogue and required physical touch whether reels, 8-track, vinyl, tape or CD and a dedicated HiFi system room. She is also an inveterate explorer of music, while having her baselines and go-to’s, she is always searching new artists and sounds. So running Qobuz and Tidal through Roon with her music collection digitized was what turned her around. Then we moved to a larger house with massive stone walls and having synced multi-room continuity embedded it for her.

As the LBD started taking its first bites, she was very frustrated in Roon that she could not find -her- music. But she compensated quickly as she started to forget what her music collection was supposed to look like and started to engage much more in exploration.

She reads religiously new-music reports and if it sounded OK on the laptop she’d fire it up on Roon (if available).

Next noticed was some of her hard and fast ‘rules’ about artists she liked and did not like was changing. Not to her core musicians, but in general she loosened up on some genres and steered away from former stalwarts (am afraid she’s less patience with my opera than before).

Still struggling to encapsulate some of the changes, but a few positive things really stand out:

  • with forgetting easily she is ecstatic to hear an album we played the day (or a few hours) before as if it had been forever and she was rediscovering it again. Was sneaky and got Beatles White Album at least 3-days in a row with her was bopping around each time to Rocky Racoon as if it had been years!

  • the Roon Radio is a godsend, sometimes it gets way off-track, and she’ll have me kill a direction, but sometimes when it goes from a fogey rock-staple to a hard-metal cover of the similar staples hilarity ensues

  • having constant music everywhere in the house seems to keep her grounded and frequently she will start dancing or interacting with a song that strikes her fancy. Serendipity and joy are targets in managing LBD decline and Roon has become a strong vehicle for this.

  • she never used to sleep with music on, music was for active listening, now she sleeps easily with Roon radio and her ‘sleeping restlessness’ that is a symptom of LBD seems less (caveat, non-scientific, impression only)

Nowadays she sometimes calls me as she can no longer find Roon, and she is -■■■■■■- at MS Windows and her laptop (never Roon ;-). She is usually lost in her browser and forgets Roon as App-only. The woman who bought our first computer and taught me spreadsheets, hacked her way into early internet medical research repositories when she was diagnosed with cancer in the mid-1990’s (statute of limitations long gone but somehow she is still a registered as a Dr. of Neurology in some medical sites) and consulted Microsoft developing MSProject Enterprise now gets confused between a browser and an app (yeah, ouch). So we’ve set up an old tablet as a fallback if I am out of the room. If she can find it.

Well, I stop here, not sure where I was going with this share. But it really struck my mind how integral continual music coverage in the house means to her during this decline…and the idea that although this is a community of often very technical folks, you might enjoy hearing how impactful this is from the other side …

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I feel for you, @rufous_lechat, as my father was recently diagnosed with dementia. When I took my father out a couple of weeks ago, I played Swing While You’re Winning by Robbie Williams, as that’s all I had to hand while driving. He started singing along to Mack the Knife and Ain’t that a Kick In the Head, something he hasn’t done for years. Later, I pulled out some Sinatra and other crooners. So, yes, music is incredibly beneficial to someone with dementia.

I imagine your partner will rely more on those “baselines and go-to’s” down the road. All the best, and thanks for sharing.

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My friend, you sound as if you are doing all of the right things for your partner and getting enjoyment from it as well. I can only hope that my partner will support me in listening to music should anything befall me, i must try to instruct her in how Roon and the equipment works asap!

I wish you both all the best.

Peace and love

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I’m sure there are many here, me included, who hope that when whatever is going to come for us inevitably does come, music will be a part of what makes it at least a tiny bit more bearable.

Music is a powerful force. Thanks for sharing your story with us.

Wishing you and your partner all the best @rufous_lechat.

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Thanks for sharing. Lost my Father to Alzheimer’s in my late twenties had lived with it from my late teens. Unfortunately he went to quickly and by an aggressive route and lost control of too many things and was sectioned to protect my mum. His decline after that was never stable. Sounds like you’re doing all the right things for her which is all anyone can ask. Seeing the onset and demise that Dementia causes is something that’s never easy to deal with and manage.

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Thanks for the kind words:
@mjw, best of luck with your father’s journey, if it may help A Beginner's Guide to the End: Practical Advice for Living Life and Facing Death by B.J. Miller | Goodreads is my go-to reference these days. And yes, to mention the sing-alongs. as someone who cringed when she (anyone) missed a note, now no issues croaking along and beating out of tune, the joy is there … will keep trying to do more of these …
@glimmer, yes to share the Roon tooling with your partner, for all reasons, must keep the system running :wink:
@kneville, she was reading about how rare it is in and animal kingdom to be able to keep a beat. but for humans this is fundamental. each of her cats have a dedicated song, and they know it when she sings it to them and start purring. so yes, amazingly powerful thing Roon enables (yes, trying to keep this on Roon as a topic and not maunder too far into my over-arching context)_ … have mentioned this to her neurologist, see where this goes …
@CrystalGipsy, have lost an uncle and g’mother to Alzheimers. The fear and paranoia was intense. DLB is supposedly ‘gentler’ and this i see, but indeed an anger episode can be diverted with music. But this physical lack of control is a real thing, sorry for your family, very hard. For us it helps that she and I are long time battlers. We used to have boxing gloves and would do rounds of boxing to Metallica, each song a round unless one of us dropped. She split the seams of her gloves and has been bare-knuckling ever since. Now when she hits she risks her hands and bones and can barely make a hit … but put Metallica on and she is game for a shadow boxing match…

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My thoughts to anyone going through this with their parents. My mum had dementia for 10 years, my dad 5 years. But his developed faster and took him first. Mum went 5 months later. Typing this with tears swelling.

As it progresses you can’t make any more memories for them, only dredge up the long distant ones. But doing so does help, and music can play a big part in that.

And you can make moments for them. Fleeting ones that get forgotten straight away. They do bring pleasure though, both to the sufferer and you. And at the end I for one looked back on the desparately difficult time with the satisfaction of knowing I was there for them when they needed me, just as they were for me thoughout my life.

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Music was a thread of happiness through my Mum’s dementia decline. Her rest home managed to organize her attendance at clap-along participation sessions with the local symphony orchestra. She was just bursting with joy. Love the Roon story @rufous_lechat. Any hope of tablet usage was an early casualty of my Mum’s decline :laughing: So beautiful and intense that you are on this journey with your life partner. That’s next level compared with being responsible for a parent but being able to walk away. I am so glad you shared this. Every word you typed is appreciated. Huge love to you and madame :heart:

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My late mom also had Lewy Bodies. Music helped her a lot in staying grounded, until inevitably, she completely lost interest and stopped listening. You’ll know when this happens, because the hallucinations will dominate.

I’m sending love and courage to you. This is a tough, tough path.

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This topic is very timely. I’m setting up Roon for my own enjoyment, but I’m hoping that I can help my 80 y/o brother who is experiencing early non-Alzheimer’s dementia and now gets lost navigating his Mac and online radio. He was a dedicated audiophile since high school, and has been an avid classical music listener all his life.

But mostly, now, he is bored. Clinicians tell me that decline accompanies lack of mental stimulation, although the connection and causality are not fully understood. There apparently has been some evidence that dementia may improve when a sufferer’s vision is restored through cataract surgery. So I’m taking that as an invitation.

In this spirit, I have invited my brother to stay with me for a week, and I’m going to try to teach him some version of both YouTube Music and Roon, both playing through a new Google TV into my stereo. If it works, he could maybe get the same at his house.

I was delighted to see that Roon considers my TV an audio device, and that I can set up the TV to feed the digital audio signal through the TV to my pre-amp with no loss, and meanwhile Roon’s album art shows on the screen. I was so delighted, in fact, that that is my setup for myself now, and I don’t think I’m going to need my dedicated streamer since my pre-amp has its own DAC.

I’m trying to figure out how to simplify the system operation as much as possible, using only an iPad for Roon and the native TV YouTube app for that. We need a system that’s as close to “turn-key” as possible for both music sources.

The Nucleus seems like a good idea for the Roon Server, it’s seems by description to just be there and doesn’t need human interaction once it’s set up and turned on. I can remove all the apps on the iPad other than Roon, and hopefully make the iPad boot up into Roon. I’d like to limit YouTube to music so that it’s more difficult to get lost down a rabbit hole, but I’m not sure I can do that. At a minimum I want super-easy YouTube and Roon procedures to get the systems back “home” for a re-start.

All you out there, feel free to suggest anything that will help him and me and his helpers keep listening (and watching) for as long as possible.

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Sending good vibes to everyone here who is dealing with someone in the family with these various maladies. First-hand experience dealing with dementia and Alzheimer’s, it is taxing on a family, and we tried to make things as comfortable as possible for them.

Anyhow…

A little tip if you live with someone who has trouble finding Roon on a tablet–on Android, you can “pin” an app. (Not sure about other platforms.) What that does is keep the app in the foreground, so nobody has to look for it–it’s always there. In addition, the tablet doesn’t even need a login/password at that point–the app is already open via a screen or power button tap. I use this when I hand one of the tablets or phones around to control Roon. No worries about having someone press or swipe the wrong thing and have the app disappear.

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My mother passed away last month following several years of fighting dementia, it really is the cruelist of diseases.
Music definitely helps, 100%. My mom was in her armchair a couple of months before she passed and I was playing all of her old favourites… The Beatles and Cliff Richard mainly. She beckoned for me to help her up which I did as i thought she needed the toilet. She actually fell into my arms and started dancing with me. It’s a memory I’ll treasure forever.
Sending love to anyone who is dealing with or has dealt with Dementia.
Barry.

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