Cruising with dementia

[BenMurphy]

I don't know what I'm expecting,but here goes !!!!

My lovely hunband has developed(early onset) dementia.

At the moment it's under control and liveable with, he has small memory problems.but not enough to worry about. He's forgetting the correct names for things .

We have a cruise booked on board Nautica 15th August Barcelona/Jerusalem (I will try to get it changed to disembark in Istanbul as Turkish Air flies directly into Manchester wheras air from Jerusalem is via the hell of Heathrow Airport to Manchester.)

I have to decide before the end of March when our final payment is due.

We have cruised with O many times and we're familiar with the layout of the ships(important for hubby as he remembers this kind of things!)

Anyway after the ramble there is a question:

Has anyone any experience , ideas or tips for cruising with Dementia passengers?

I did ring O and was told to stop worrying as our lovely staff will help with this kind of thing,but I'm still not sure. I also have a check list from O : Checklist for passengers with reduced mobility,but this really doesn't cover our situation.

Any tips/ideas will be welcomed

Thanks in anticipation

Josie (AKA Ben Murphy)

[deus]

Hi Ben Murphy - I would imagine it would be easier when leaving your cabin always turn right or turn left - don't go one way on day and another way another day - go the same way each and every day.  There are phones on the walls in the elevator area that can help to remember which side your cabin is on.  That is all I can think of.  Have a great cruise!

[ToxM]

Hello, 

 

I am so sorry to hear about your husband’s diagnosis. I took my dad on a cruise when he was fairly far into his journey with vascular dementia. The fact he is going on a ship he has fond memories off will be very helpful - I would point out maps of the ship in all the locations and use memory tricks like the side of the wall the phone is on when you leave the lift to get to your cabin (I think evens have the phone on the correct side to head down). Large print currents so you and he can find and mark things you want to do. A nightlight for the route to the bathroom as even the best of memory finds that an issue the first couple of days - or even leave the light on and the door to the loo cracked a little. 

 

We cruised on P&O with my dad and formal nights were a challenge, so no worrying about that on Oceania. I would suggest a Dementia clock to take with you, as the time changes can be confusing and maybe a big calendar to mark off the days, as the change in routine threw my dad somewhat. 

 

The fact he has good associations in his neural pathways with Oceania will help him deal with all the new situations. 

 

I am sure I am preaching to the converted with all these ideas, but mainly for us it was the change in routine and the passing of time that made things troublesome for my dad. 

 

He has a fabulous time, enjoyed his trip and spoke of it often. 

 

My very very best wishes to you and hubby in your journey. 

 

 

[Harters]

Josie

 

There is a "Disabled Cruise Travel" forum. I know dementia isnt the usual sort of disability discussed but the matter may have been discussed there in the past

 

https://boards.cruisecritic.com/forum/114-disabled-cruise-travel/

 

Or, better, enter "dementia" into the search box on the "front page". It'll bring up nearly 500 previous posts mentioning the word (just looking at the first few, a couple are of the smarta*se variety but most seem as though they might be helpful.

 

John

Edited February 8, 2022 by Harters

[gardenbunny]

My sister’s husband who is now 78, was diagnosed Nov 2020.  We all went on a land trip in May 2021 and he did quite well.  Then we all just went on a Princess New Years Eve cruise not knowing how he would do.  My sister needed a change of scenery badly.  

He is quite frail with a shuffle walk disability issue and uses a rolator.  He seemed to enjoy it and did well.  Not sure how much he understood as he does not talk very much.  He can get aggitated easily not understanding the conversation we are all having about what we are about to do, so naturally you have to tell him slowly and in simple sentences.  One morning my sister did report that when they returned to the cabin one evening he got confused and did not know where he was and when she told him on a cruise ship he said what the h*** are we doing on a cruise ship.  But she was able to calm him down.

We always told crew members he had dementia issues and they were very friendly and understanding.  I am sure a number of them have experience with that.

My sister has to get his food at the buffet as he is not capable of doing that,  and read the DR menu to him but only tells him about items she thinks he might like.  Plus he eats very little and has become very picky due to the dementia.  He was never left alone and my husband would accompany him to the restroom if we were about on the ship.

They had an accessible cabin that was 4 steps from the central elevators which was very helpful.

They only went on 1 simple excursion that seemed to work for them.  But did get off the ship for an hours or so  if it was a port with a small shopping area.

Everyone with dementia is different based on where they are in the disease.

Based on what you have said, I think you should  be fine and keeping all activities within his comfort zone.

I was the caregiver for my father for 8 years with Alzheimers.  He used to love to go to our second home in the mountains, but as his dementia progressed, it became too difficult for him to go and upsetting him to take him away from his routine.

It is not easy, but enjoy the times you can do things together.  They will be special memories for you later on.

God bless you both

[Hawaiidan]

20 minutes ago, gardenbunny said:

My sister’s husband who is now 78, was diagnosed Nov 2020.  We all went on a land trip in May 2021 and he did quite well.  Then we all just went on a Princess New Years Eve cruise not knowing how he would do.  My sister needed a change of scenery badly.  

He is quite frail with a shuffle walk disability issue and uses a rolator.  He seemed to enjoy it and did well.  Not sure how much he understood as he does not talk very much.  He can get aggitated easily not understanding the conversation we are all having about what we are about to do, so naturally you have to tell him slowly and in simple sentences.  One morning my sister did report that when they returned to the cabin one evening he got confused and did not know where he was and when she told him on a cruise ship he said what the h*** are we doing on a cruise ship.  But she was able to calm him down.

We always told crew members he had dementia issues and they were very friendly and understanding.  I am sure a number of them have experience with that.

My sister has to get his food at the buffet as he is not capable of doing that,  and read the DR menu to him but only tells him about items she thinks he might like.  Plus he eats very little and has become very picky due to the dementia.  He was never left alone and my husband would accompany him to the restroom if we were about on the ship.

They had an accessible cabin that was 4 steps from the central elevators which was very helpful.

They only went on 1 simple excursion that seemed to work for them.  But did get off the ship for an hours or so  if it was a port with a small shopping area.

Everyone with dementia is different based on where they are in the disease.

Based on what you have said, I think you should  be fine and keeping all activities within his comfort zone.

I was the caregiver for my father for 8 years with Alzheimers.  He used to love to go to our second home in the mountains, but as his dementia progressed, it became too difficult for him to go and upsetting him to take him away from his routine.

It is not easy, but enjoy the times you can do things together.  They will be special memories for you later on.

God bless you both

Most important, being in a similar situation, is  that the situation will not get better.   It is thus important to take to person to as many places  as soon as possible     Time is your enemy...      If the person is semi ok and not to the point of not being able to function without assistance  then  that becomes dangerous to both care giver and  patient.   

 However,, if it is just on and off comprehension and short term memory then go ahead  and travel as much as possible. as soon as possible      

You will as a care giver know when the time to stop is......trust me.

 

[MEFIowa]

4 hours ago, BenMurphy said:

...My lovely husband has developed (early onset) dementia. At the moment it's under control and liveable with, he has small memory problems. but not enough to worry about. He's forgetting the correct names for things. ... Has anyone any experience, ideas or tips for cruising with Dementia passengers?

Of course, sympathies for his condition and your situation. ONLY you and your medical provider will know what may or may not be appropriate for him to do then.

 

But do keep your fellow passengers in mind.

 

While on Riviera 12/13-23/21 we had to stop off Key West for a medical situation (non-COVID) with an elderly gentleman. I saw him strapped to the stretcher going onto the small Coast Guard patrol boat with an O nurse from right above on Deck 12. The pictures look like Boris Karloff in Plan 9 From Outer Space. He should NOT have been travelling. It did not appear he was physically or mentally capable of cruising.

 

My wife met a...fascinating...older woman who often smoked with her on Deck 12. This woman would shuffle to and from the smoking area religiously. Constantly saying over and over, "What time is it." There is a big clock that can be viewed from the deck! Seemingly on the hour, every hour. Shuffle to and from the aft elevator. She wasn't all there. And one night she asked my wife if she could go to her room and help her get ready for bed. My wife, an angel, helped her out. BUT it also creeped her out that this woman was having such difficulty taking care of herself. There was no sign of another in the room with her, but she said she had a husband. Never saw him. 

[LHT28]

We have met people  with various stages of dementia  onboard  only you can decide  how your hubby will cope  in  a strange place

Try to keep things  as simple/normal as possible

 I would get some sort of I.D, bracelet  with his name etc  on it just incase he does get more confused/lost  & not able to communicate effectively with staff

Talk with your doctor  to see what they suggest  as well

 

Wishing you  a safe  trip

 

[Kate-AHF]

I second the suggestion of a dementia clock, and get one now so that is one more thing that will feel familiar and comforting in the cabin when you pack it along for the trip.

 

[Hawaiidan]

1 hour ago, Kate-AHF said:

I second the suggestion of a dementia clock, and get one now so that is one more thing that will feel familiar and comforting in the cabin when you pack it along for the trip.

 

The idea of something familiar is a excellent idea...   Frequent travelers who spend long bits  of time away from home  bring  things like a family picture, tooth brush/comb  slippers  ..... personal things that connect  the person to his home.......    Sort of like what you might do with a young child to make them feel secure.

 

It is a challenge  but can be rewarding to spend more time with a special person while they still can relate to you....... 

 Good for you too knowing you got to connect and share experienced together that which never can be replaced.....   Time is your adversary..     

[FlyerTalker]

7 hours ago, BenMurphy said:

We have a cruise booked on board Nautica 15th August Barcelona/Jerusalem (I will try to get it changed to disembark in Istanbul as Turkish Air flies directly into Manchester wheras air from Jerusalem is via the hell of Heathrow Airport to Manchester.)

 

Since this may be one of the last cruises you two will take, don't feel you need to cut it short.  Flying home from Tel Aviv does NOT have to go through LHR.  A couple of one-stop options that don't include Heathrow are:

 

Aegean via Athens

Finnair via Helsinki

TAP via Lisbon

Air France via CDG

Etihad via Abu Dhabi

Emirates via Dubai

Brussels via Brussels

 

and if you want to fly Turkish, they fly from TLV to IST to MAN.

 

Just a few thoughts so you can maximize your time on the cruise.

 

[KatieBelle]

Josie (aka Ben Murphy)

We wish you a wonderful cruise vacation and pray that you both will be well.  I will give another vote for the dementia clock.  Here is another suggestion that may or may not be for your situation.  Have a magnet made with a photo of the 2 of you.  Have it on your fridge so it becomes familiar.  Use it on your stateroom door as a reach back to home and recognizing your new "home".  Truthfully, we always have some small magnet on our door just to distinguish our stateroom from all the others.  They do tend to look the same, especially after an evening in La Reserve.  🍷

Katie

[pinotlover]

I have witnessed issues with fellow passengers having dementia issues. All of those issues were the result of their traveling partners allowing them to wander or roam the ship ( or port) unattended. If you commit yourself to stay with your husband anytime he leaves your cabin, you wouldn’t have issues. If you allow him to wander unaccompanied then……

[Vertygo]

Josie, I know exactly what you're going through. We took our 1st O cruise a year after my husband was diagnosed with Alzheimer's when he was 63. No issues at all since he was early in the disease. Our 2nd cruise was 3 years later & the only issue was some confusion when sharing a table with others- he would get mixed up about which water glass or bread roll was his. Luckily the other couple was very understanding, but I didn't share a table after that.

We plan to sail in April on Regatta Papeete/LAX, but he is more advanced now & I'm holding my breath about whether we'll be able to go. He very much wants to go, but also doesn't realize how advanced he is. Make sure you have trip insurance with coverage for existing conditions. I scheduled this cruise in 2020, when he was able to travel easily, hoping he'd make it. 

My recommendation would be to travel as much as you can now while he's able to do so. Stay with him everywhere on the ship- although he's been before, those corridors all look alike & are confusing for those without dementia!!  Schedule excursions that are within his ability & comfort level. My husband can no longer hike, but ok with walking shorter distances. My husband wears a Jio-bit, a GPS tracker which is linked to my phone, so if he wanders off I can map his location.

Most of all, enjoy your cruise & make the most of the time you have together. I've made photo books of our trips so my husband can see all we've done.

Linda

[LuAnn]

Thanks so much for all this info. We too will be cruising for the first time with my DH dealing with dementia plus Atypical Parkinsonism.

 

The ID bracelet is a great idea..and I'll Google a "dementia clock" and see what that is!! 🙂

 

I imagine it will be very different from our previous cruises but we both want to sail as long as possible. The ship will be the destination!!

[BenMurphy]

Thank you all so much and your kind replies.

They are all so helpful.

Here in the U.K We have "hidden disabilities" web page and I have bought a couple of Lanyards and a scarf. They have also sent a couple of cards : " I care for someone and support someone with Alzheimer's" and "I may have memory problems.I might have difficulty communicating with you and can become anxious". Please be patient with me.

They have sunflowers on a green background are easy to spot. He has a dementia clock and I will take this and a battery operated wedge for the door,if the door is opened and I am sleeping the alarm will sound.

Good luck LuAnne I hope that all goes well for you.

My agent has sent a questionaire from O : Check list for clients with reduced mobility. Has anyone seen this before? I don't really think that it applies (at the moment!) but who knows?

Once again....Thank You

best wishes Josie x

-

[cruisingxpert]

13 minutes ago, BenMurphy said:

a battery operated wedge for the door,if the door is opened and I am sleeping the alarm will sound.

How loud a sound does it make? My sister's husband has vascular dementia and she worries that he might go out of the house when she is sleeping.

[FlyerTalker]

1 hour ago, cruisingxpert said:

How loud a sound does it make? My sister's husband has vascular dementia and she worries that he might go out of the house when she is sleeping.

 

Looking at some sold on Amazon, and I am finding sound levels between 100 and 120 decibels.  I'd stay away from the 120s - that's rock concert and jet engine levels.  Might be useful to scare a burglar, but a dementia patient would likely be quite disoriented with this, and would likely keep the door open and the alarm going.

[BenMurphy]

On 2/12/2022 at 3:34 PM, cruisingxpert said:

How loud a sound does it make? My sister's husband has vascular dementia and she worries that he might go out of the house when she is sleeping.

There are various levels that you can set the sound at ( I always try to take into account the proximity of other guests) Check Amazon or one of the (many) dementia web pages.

I also try to hang a pair of trousers (by the belt loops) on the door handle! Fiddling around in the dark to unhook it ususlly wakesme!

Best of luck

Josie

 

[Vertygo]

Heads-up regarding trip insurance for someone with Dementia. I had purchased a policy through Allianz to include pre-existing conditions in 2019 for what ended up being the 2022 Tahiti/LA Regatta cruise. Unfortunately, my husband's Alzheimer's advanced such that he could no longer travel & we had to cancel. Allianz denied the claim citing on clause on page 23 stating that a "mental or nervous health disorder including Alzheimer's" would not be covered. Obviously, Alzheimer's is a neurological condition.

After getting nowhere on the phone with Allianz, I sent a review request to the California Department of Insurance with all the necessary paperwork including our Neurologist's letter and mentioned that Washington state is suing Allianz for similar denials. 

I received an e-mail from Allianz today stating that after further review they realize this is a neurological condition & the check is in the mail for the entire amount.

 

Take-home lessons from my experience: 

    1. Read every last paragraph in the policy. I should have caught this & questioned it from the start.

     2. Don't give up. Right is right & sometimes getting a government agency with some clout can make a difference. I just wonder how many other people in the same situation gave up & never got the money they were due. I know the Washington lawsuit involves 400 people.

[Condocat]

My heart is with you through this difficult journey, but maybe this can give you some peace of mind to enjoy your time together.

 

Apple has come out with "Air Tags" for tracking luggage that also have other applications.  Many people are using them during vacations to location their children at theme parks!  This might be "insurance" to find your husband if he ever slipped away from your watchful eyes.

 

The Apple Air Tags are small, thin and lightweight, about the size of a quarter and can be easily secured to a belt loop or inside a pocket with a holder.  The Air Tag is paired with your iPhone where you can track the person/item.

 

The Air Tags come in a pack of 4 for $100 and includes batteries.

[wiks]

My wife was diagnosed with early stage FTD Dementia in 2009.  We cruised together for over 500 days on Oceania through her advancing stages until the end of 2016 (she passed away from the disease in early 2017).   While it can be complicated the Oceania staff was incredibly helpful and understanding; and most passengers were the same with just a few exceptions.  It is also very helpful if you have any close friends who are able to cruise with you to “give you a break” now and then with the care giving.

 

We were able to participate in tours, trivia, spa treatments, afternoon tea, evening shows until our last cruise in 2016 when mobility problems made that more difficult. The memories were worth all the difficulties.

 

Wik

[Mrs f.]

2 hours ago, Condocat said:

My heart is with you through this difficult journey, but maybe this can give you some peace of mind to enjoy your time together.

 

Apple has come out with "Air Tags" for tracking luggage that also have other applications.  Many people are using them during vacations to location their children at theme parks!  This might be "insurance" to find your husband if he ever slipped away from your watchful eyes.

 

The Apple Air Tags are small, thin and lightweight, about the size of a quarter and can be easily secured to a belt loop or inside a pocket with a holder.  The Air Tag is paired with your iPhone where you can track the person/item.

 

The Air Tags come in a pack of 4 for $100 and includes batteries.

Is there such a device for android phones?

[GeezerCouple]

13 hours ago, Vertygo said:

Heads-up regarding trip insurance for someone with Dementia. I had purchased a policy through Allianz to include pre-existing conditions in 2019 for what ended up being the 2022 Tahiti/LA Regatta cruise. Unfortunately, my husband's Alzheimer's advanced such that he could no longer travel & we had to cancel. Allianz denied the claim citing on clause on page 23 stating that a "mental or nervous health disorder including Alzheimer's" would not be covered. Obviously, Alzheimer's is a neurological condition.

After getting nowhere on the phone with Allianz, I sent a review request to the California Department of Insurance with all the necessary paperwork including our Neurologist's letter and mentioned that Washington state is suing Allianz for similar denials. 

I received an e-mail from Allianz today stating that after further review they realize this is a neurological condition & the check is in the mail for the entire amount.

 

Take-home lessons from my experience: 

    1. Read every last paragraph in the policy. I should have caught this & questioned it from the start.

     2. Don't give up. Right is right & sometimes getting a government agency with some clout can make a difference. I just wonder how many other people in the same situation gave up & never got the money they were due. I know the Washington lawsuit involves 400 people.

 

Thank you for posting this!

 

Perhaps you could re-post it on the Travel Insurance sub-forum here on CC?

This is really important for others to know about more generally... both about "reading the terms carefully" and also about how it might be worth it if you think the denial isn't appropriate.

 

GC

[KS&JW]

5 hours ago, Mrs f. said:

Is there such a device for android phones?

Tile is one option.