Dementia: Sundowning

SunDown Syndrome Picture:

I often struggle with Maureen’s presentation during the late evening.  One possible explanation for her behaviour is ‘Sundowning’ and Tracey Maxfield directed me to this article yesterday after an exchange on Linkedin:  

This article is a publication of TogetherinThis.com and has been republished with their permission.”

Editor’s Note: The term “Sundowning” is sometimes used as a negative label which can be damaging to the care provided, and results in unjust stereotyping. This contributes to approaches to care that focus on weakness rather than strength, illness rather than wellness, and victims rather than whole persons. It’s important, as the author states, to look at any behaviors as a form of communication. This will help you discover, and hopefully, address the trigger that is negatively affecting your loved one. Learn More.


Contributing Writer:  Christy Turner, founder of Dementia Sherpa

Sundowning can be one of the scariest things you encounter as a dementia care partner. Everything seems to be going well, and then, seemingly out of the blue, your person goes into full meltdown mode.

What happened?

Depending on the time of day, it’s probably sundowning.

Sundowning refers to behaviors that occur late in the day; hence, the name. This can include any type of behavior. The common element is how difficult it is to “reach” your person, as they may seem inconsolable.

Keeping in mind that “behaviors” is just another word for “communication” can help make it a less scary experience.

Remember that for people living with dementia, it’s easier to understand our nonverbal cues and body language than our words, so do your best to stay calm throughout the experience.

Here’s what else to do:

1. Maintain visual supervision. Depending on the severity of the situation, you probably shouldn’t get inside their personal bubble. Safety is the first priority, so just do what you need to do to maintain that, without being intrusive.

2. Once sundowning has started, it’s very difficult to stop. If caught early enough, you can try distraction and redirection.

Understand that in order to fully stop it, you’ll need to be completely engaged with your person for the next few hours.

Using the television usually won’t work.


Visit the Together in This Amazing Store for Useful Items to
Help You Navigate Sundowning


3. Turn on all the lights and cut off other stimulation. This decreases confusion both about the time of day, as well as helps with visual hallucinations and visual-spatial impairments. Cutting off overstimulation (TV, radio, people talking) is one of the smartest, most effective things you can do.

4. Match your tone and pitch to your person’s. This isn’t to say yell back, but if they’re throwing out a heavy-metal kind of energy, you bringing a Lawrence Welk vibe is just going to irritate.

5. Whip out the lavender or geranium essential oils. Either of these in a diffuser can be super useful in promoting calm. Also consider spraying some on a shirt collar.

6. Burn off the energy. Any type of physical activity will be helpful in using up the sundowning energy.

7. If it’s safe, offer physical affection. Hugs make everyone feel better, but if that’s not possible offer your hand (palm up, a sign of submission) to hold.

8. Synchronize your breathing. If it’s safe to get close enough, synchronize your breathing. Once synced, work toward deep breaths and long exhales.

9. Please don’t be a jerk! This only happens unintentionally, but it’s still not cool. Think of a time when you were angrier and more frustrated than you’ve ever been in your life.

Now, think of your parent or partner telling you to “just calm down” or “relax” or assuring you that “you’re fine” and “there’s no need to be so upset.”

Helpful? Nope! You probably felt your blood pressure go up even more, right? Same goes for people living with dementia. We all like to be taken seriously and have our feelings validated.

10. Be a hero. Remember, as scary as this is for you, it’s even more terrifying for a person living with dementia.

They don’t know why this is happening, they can’t verbally express their thoughts and feelings, and they’ve lost the ability to self-soothe.

You make it okay for them by stepping into their reality and offering reassurance: “I’m here for you. I love you. I’m going to keep you safe.

I’m not going to let anything bad happen to you. I will always protect you.”


About the Author: Christy Turner is the founder of Dementia Sherpa. She’s helped over 1100 through the rough terrain that is dementia.you can visit her site and learn more about her and her great resources at DementiaSherpa.com.

Footnote:  I’m meeting with Maureen’s Key Worker in three hours.  He planned to visit her yesterday afternoon in Ashgrove Care Home and I’m really looking forward to hearing how she is doing.

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Dementia: Early Diagnosis

Excellent news from:

AoFNHSS Hi Res

Dementia diagnosis in Cumbria now four times faster thanks to ‘virtual clinics’

‘New virtual clinics in the Memory Matters team at Cumbria Partnership NHS Foundation Trust means patients suspected of having dementia are able to be diagnosed four times faster than before.

This is because the whole referral to diagnosis process has been streamlined.

David Storm Senior Clinical Services Manager explained: “Staff in the Memory Matters team at Carleton Clinic Carlisle have been piloting Virtual Clinics since early in 2015. There have been radical changes in how the team works. Previously patients who were referred to the team by their GPs went through a long diagnosis process which included being seen initially by a mental health nurse for assessment, tests and brain scans requested, then sometimes a substantial wait for a follow up 45 minute appointment with a Psychiatrist.

In the Virtual Clinics new referrals are screened, the patient is then seen for a full assessment by a nurse including elements previously done by a Psychiatrist. A brain scan is then requested, together with other assessments with the person and their family. The ‘virtual’ part is next; the nurse will present the case – without the patient, to the Psychiatrist and Memory Matters team, so all the experts needed are in the same room. An in-depth discussion is held which takes into account the patient, their family and carers, as well as all the assessment results. A diagnosis and appropriate treatment plan is made based on the information at hand. The diagnosis is usually given to the patient by the same nurse they have seen at the initial assessment which makes the patient feel more comfortable.

Virtual Clinics have now been rolled out across Cumbria. The new diagnosis process means that the patient is being seen by less people and the process is speeded up. This is incredibly important considering the increasing numbers of people with dementia in the county; the number of people being referred for diagnosis has nearly doubled in the last year*.

Dr Darren Reynolds Consultant Psychiatrist said” More patients are seen in much less time. Nurses carry out high level assessments, share knowledge and there is a much better outcome for the patient”.

Helen Todd, Senior Nurse in the community mental health team said: “The Memory Matters team continually challenge themselves on how they can keep improving and what they can do better. Referrals have increased by almost 200% in the past 12 months and a diagnosis is now given 4 x quicker than previously. There is a much better use of resources within the team and no there was no need to recruit any extra staff so we are far more efficient. Now there are no waiting lists and patients are seen within 15 days. Also because of the team’s #seethePERSON project, which focusses on the person behind the illness – all people referred are seen from their perspective, placing Dementia into the context of their life as a whole and focussing on improving quality life, not just the symptoms which benefits both patients and families”.

Feedback from GPs is very positive. Some comments were “Great idea, no negatives from me!” “It has been great – patients seen quickly, tested and given a management plan.” “I think it’s working well. Same nurse equals consistent assessments. We couldn’t get this detail in primary care without investing lots of time. Allows Consultants to see the more complex”.

Footnote.  The above article is another example of the Academy sharing Fabulous Stuff.

Yesterday:  I caught up with some good folk from Navigo to thank them for their support over the years.  Just by chance,  I had the good fortune of catching up with a Crisis Worker who asked me if I remembered him.   At first,  I confused him with another member of staff,  then I recalled some advice he gave me that was fundamental to moving on from depressive episodes: ‘never go to bed without having plans for the next day’.  Anyone who has ever had depression will know how scary it is to wake up in the morning and have no idea how you are going to fill your day!

I also made good progress on a number of domestic issues that have been hanging around for a while.  Hopefully, this will mean that I’m a little more relaxed when Maureen comes home from Ashgrove Care Home on Monday afternoon.

This morning:  After another early start to the day, I have already taken in both the Fureys and the Highwaymen in concert and will be leaving shortly to join the early birds at Cleethorpes Leisure Centre

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Dementia: Dementia Awareness Week

As a contribution to Dementia Awareness Week I ‘m submitting this short piece to Dementia UK for possible publication:

Admiral Nurses: Rescue RangersImage result for Dementia Uk Photograph

Any diagnosis of dementia for your loved one is frightening.  When it’s vascular it’s terrifying as there is no treatment for this condition.  When Maureen diagnosis moved from Mild Cognitive Impairment to Vascular Dementia a discharge from our Memory Service followed, along with information about groups and organisations that might be able to help.

I think it was just by chance I heard about Admiral Nurses during a meeting of the Patient Participation Group at our Medical Centre.  Someone I respected was singing their praises and gave me some contact numbers.  Three years and one Admiral Nurse later I’m indebted to my colleague from our PPG.

I’m sure like most Care Partners I’m often in despair, completely at a loss to try to understand my wife’s presentation.  On other occasions, I’m not sure what to do when nothing I try seems to shift my wife from an unattainable focus: ‘I want to go home to live with my parents’ – (who have long since passed).

I’m demanding by nature and our Admiral Nurses are frequently overloaded with my requests for support and advice.  Mel and I are now scheduled to meet every fortnight as I attempt to cope with the progression of my wife’s condition.  I also forward my daily Blog or telephone Mel when the going gets tough: it would be unusual if there isn’t a reply within hours.

IMHO Admiral Nurses should be available throughout the country.  I certainly would not cope with the expertise that is always available despite workloads that are probably exceed anything a professional would be expected to undertake.

Ends

I’m catching up with a member of staff from Navigo in an hour.  Five years ago as the Manager of an Acute Psychiatric Unit, she advised me to ask my Psychiatrist for Day Release.   Returning home for a day was a significant step in my recovery from recurrent depression.  Forgoing basking in the Spa and Sauna for a glass of water is a small price to pay for an opportunity to thank her for that advice!

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Dementia: With A Little Help From Our Friends

It was mid afternoon before we got Maureen into Ashgrove yesterday,  Lots of people helped along the way and her reception at the Care Home was excellent.  Once again her Key Worker played a blinder by easing her into his car and using classical music to distract as we moved towards our destination.  There is a simple explanation why she likes’Ginger’:  he always treats her with dignity and respect!

As ‘Ginger’ dropped me back home his parting words were to ‘take a rest and switch off from my caring role’.  Within an hour I was basking in the Spa and Sauna at Cleethorpes Leisure Centre.  How refreshing to meet an ex-miner in the Spa and to chat over the good old days when we both active trade unionists.   Moving onto the Sauna I met a young man who worked at Humberside Airport and found out about interesting developments in his neck of the woods.On my return home I went to bed around 6 pm and rested for over 7 hours.

My focus this morning will be on catching up on a mountain of paperwork that has built up over the last few weeks.  Our heating engineer will be here around noon to replace a fan and sort out a minor leak. Once we have hot water again I need to catch up with Maureen’s Aunty Clarice. We will always be indebted to this incredible woman, now in her mid-eighties, for her support.  She is a veteran carer for someone with dementia as her late husband had Alzheimer’s disease for over 20 years.  Her latest contribution to helping us was to sew labels on Maureen’s clothes so they don’t go missing in Ashgrove: a small act compared to the immense support she has provided since Maureen first developed memory issues. Clarice spotted the symptoms when other family members and the medical profession were reluctant to accept that Maureen was showing distinct signs of dementia. She might not have been waking up in a Care Home this morning if they had heeded our concerns: even her stroke might have been avoided!

I’m off shortly to join the early morning bathers at the Leisure Centre.

 

 

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Dementia: Real Respite At Last?

Image result for A Real Respite Break Dementia Picture

I spent a considerable part of last week trying to find a suitable place for Maureen to go while I have a much-needed break.  During this time Maureen’s Care Coordinator said to me something along the lines that ‘I wouldn’t find a perfect place’ but hearing on previous occasions that she has escaped or finding her bruised and battered whilst in the care of others is beyond the pail.

It is less than a month since my last ‘Respite Break’ which turned out to be nothing of the sort.   When you get to bed after a long day nudging your wife into Residential Care and the phone rings advising you that ‘she isn’t settled’ the writing starts to appear on the wall.  If you spend the next day seeking to avoid her being moved to an Enhanced Unit that is far from ‘respite’.  Then you are ‘bounced’ into paying almost an additional £100 one to one care through the night the writing is firmly on the wall.   To cap it all, despite an additional member of staff, this establishment continued to fail to get her to bed until the early hours and not at all on the last two nights.

When I  decided to bring her home after five days so she could get some rest things turned from bad to worse.  We had to spend  8 hours at Accident and Emergency at our local hospital to gain Maureen relief from extremely painful constipation.  This problem was visually obvious once I encouraged her to take a bath.

After our meeting with the new Manager at Ashgrove on Friday, I’m optimistic that this time I have found a solution to actually having a Respite Break.  All I have to do today is to get Maureen there with the minimum of distress and then leave them to it!

 

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Dementia: A Rude Awakening

Image result for A Rude Awakening Dementia PictureI had a rude awakening from yesterday afternoon’s siesta.  I rushed downstairs to find a neighbour at the door, with Maureen standing in her drive looking rather forlorn.  As we tried to entice Maureen back home she stormed off saying ‘of course Paul never does anything wrong’.  I trailed her as she walked around the block before eventually coaxing her home with the prospect of a cup of tea.

It was fascinating to watch Maureen on her chosen route around our neighbourhood. She stopped several times; occasionally venturing down neighbour’s drives before she neared our home.  We bumped into one or two friendly faces on our journey.  They are now familiar with Maureen looking for me and taking in the fresh air she constantly craves.

Yesterday’s rude awakening has left me in no doubt that tomorrow’s Respite Break is sorely needed.  I just hope that I can stay awake for long enough to make sure that Maureen gets to Ashgrove Residential Care Home in one piece.

I hope it warms up today as our central heating boiler has developed a fault.  A cold house with no hot water might just tip the balance between Maureen wanting to stay here tomorrow or go down the road into the warmth of  Ashgrove.  How strange it would be if it took a while to get the heating working again!

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Dementia: Time For Some Self-care

Image may contain: text

Maureen will be going into Ashgrove Care Home on Monday morning, provisionally for a week.   I met with the new manager of Ashgrove yesterday, along with Maureen’s Key Worker, and I’m confident that Maureen will be in safe hands and well looked after.

I have agreed not to visit Maureen during her stay in Ashgrove to give her a chance to setlle in in her new surroundings.  On Friday I will meet with her Key Worker to find out how things are going and discuss the best way forward.

I have no fixed plans for my week’s respite other than recharging my batteries.  The quote above, kindly forwarded by my cyber friend Dominique Klotz, says it all!

Update: Maureen woke shortly after I posted the above passages and asked me ‘if I knew where her husband was?’.  My explanations were met with disbelief and the news that ‘I couldn’t be her husband as her parents were paying for her to be looked after here’.  She is currently sitting in the lounge waiting for her first cup of tea of the day to cool looking totally bewildered.  It is really challenging to know how to comfort her when she is not sure who I am: particularly when she continues to be afraid of men!

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Vascular Dementia: ‘You Think You’ve Got It Then It Changes’

Image result for Vascular Dementia Cartoon

As I drove Maureen around last night attempting to deal with her Sundowning I saw a second possible enemy: the full moon.  It then struck me that I was probably dealing with double trouble.

Music had created a very positive atmosphere for us both throughout the day and evening.  Our Night Sitter had an early morning baptism of sound before the end of her shift.  We were still going strong listening to UB 40 when Maureen’s Care Coordinator and a colleague arrived almost three hours later.

In the evening we moved to the dining room with Dr Hook on vinyl followed by Nat King Cole.  As the resident DJ either with YouTube or a record player at hand, I use music to tap into Maureen’s emotional memory of good times that we have shared and her teenage years putting records on the family radiogram.

As the evening light began to fade Maureen became restless and I suggested a trip into Cleethorpes.  Once I saw the full moon through the windscreen of our car  I wondered about the wisdom of my suggestion.  When we arrived back home Maureen went into her ‘I don’t live here’ routine and demanded to be taken home.  After a while, I tried to shift her perspective with another car journey and a ‘party piece’ that had worked on previous occasions.

I think Maureen went along with my ‘party piece’  thinking her ‘trickster’ was just up to another prank saying he had ‘just returned from work’.  It may have been the cold night air that led me to give her insufficient time to forget I had dropped her off a few minutes earlier.  However, it did give me a few minutes to escape from the vitriol of being an untrustworthy geezer who was always kidnapping women!

As a DJ I can always pick them: those tunes that will tap into positive periods of Maureen life:  When it comes to other aspects of her presentation it’s trial and error.   Sometimes my party pieces do the trick at others they add substance to her rhetoric that I’m mentally ill and up to no good.  However,  when the going gets really tough and nothing seems to have any impact I’m consoled by the words of Maureen’s Care Coordinator: ‘with vascular dementia you think you’ve got it then it changes’.

Postscript:

Maureen’s Care Coordinator often tells me ‘you are not a robot’.  With no disrespect to her I think I prefer a ‘machine’ analogy:

References linked to today’s post:  

David SheardFeelings

 Oliver SacksMusic Therapy

Brown University: the benefits of personalised music for residents with dementia in Nursing Homes

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Dementia: Mental Exhaustion

Image result for Exhausted Carers Pictures

After a much better night, I realise how mental exhaustion has sapped my ability to think clearly.  Yesterday our Key Worker came to our rescue with a Night Sitter who has been a  breath of fresh air for both of us.   He also encouraged me to explore the possibilities for an immediate Respite Break by placing Maureen in a Care Home.  My task this morning is to reflect on the options for regaining my vitality and ensuring Maureen is in safe hands.  I’m keeping my powder dry at this stage until further discussions have taken place this morning with a number of  key players.

 

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Dementia: ‘Baby Come Back!’

Maureen was in great form yesterday from the moment we ventured downstairs.  Our early morning bird spotting went well as we sat in the dining room watching the comings and goings in our back garden.  Then ‘my baby really come back’ as we moved into our lounge.  I’m sure Ali Campbell and Pato Banton brought back such happy memories for her as I called them up on YouTube:

She sang along as she had over 20 years ago when we saw them both in concert.  Then babies dominated the discussion when Girl Tuesday arrived a few hours before her scan that would hopefully tell her that all was in order with her pregnancy.

Girl Tuesday is a very intuitive carer and moved Maureen from the kitchen sink to the shower on the pretext that this was now the only comfortable way to wash her hair.  At three months how on earth could she be expected to bend over a kitchen sink?  Her efforts meant that ‘my baby had really come back’ as Maureen looked great on my return from Cleethorpes Leisure Centre.  Her hair is now a beautiful silvery grey that most women and men would pay a fortune to achieve.

The afternoon progressed in a similarly positive manner.  Our stroll took us to Ticker-T-boo where the staff always go out of their way to talk to Maureen.  I spent a pound on a door alarm and Maureen had a lively chat with the shop assistant.  We then ventured over to the Beachcomber Holiday Camp checking on their preparations for the coming season.  As we turned to come home Maureen thanked me for taking her out saying ‘she was pleased that the locals spoke to her even though they might think she was retarded or mentally ill’.

It is rather ironic that Maureen often attributes her shortcoming to mental illness rather than vascular damage.  It is possible that she remembers my periods of depression and that is clouding her judgment.  She may be reminded of my depressive episodes this morning when I tell her I’m going to meet Paul Martin the Counsellor at Clee Medical Centre.  He built on the good work of Navigo to help me put my depressive episodes into context.  I see Paul every 6 weeks.   I hope to meet Irving Kirsch one day to thank him for his research that  helped me to understand that mild to moderate depression is not the result of a chemical imbalance and does not require a lifetime on antidepressants:

It wasn’t the medication that helped Maureen’s baby come back it was the therapy that helped me understand that depressive episodes were a reaction to my environment!

Image result for home alone picturesUnfortunately, as dusk approached there were significant changes in my environment and Maureen’s presentation.   She began accusing me of ‘keeping her a prisoner’ and wanting to go back to her children.  As is always the case I had no additional staff to call upon and faced a night of being Home Alone!

I was really taken aback by Maureen’s presentation after such a lovely day together. Homefield House reported similar experience during her stay in Respite Care: positive interaction during the day but challenging behaviour once night set in. Eventually, after a protracted battle, I managed to get her to bed by 1.30 pm which is earlier than Homefield House ever managed!

Maureen woke around 4 am asking for guidance to the bathroom.  On her return, she bared her chest to me and told me someone had stolen her underclothes.   She hasn’t been wearing a bra for months but is adamant that someone has been at her bust while she has slept.   I have made several attempts to help her but she is distraught and has been trying to pull up her trousers to support her bust.

I won’t have an opportunity to catch up on sleep today as there is no day shift to come on duty.  Rather than taking rest I will need to summon support as soon as the phone lines open for business.  I sincerely hope that any assessments of Maureen this morning are undertaken by professionals from the Irving Kirsch school of thought: ‘Dump the risky drugs’: adding further chemicals to Maureen’s body when she is already struggling to deal with the progression of her dementia seems rather risky  We don’t need dodgy medication we need additional carer sits if I am to have any chance of avoiding Carer Burnout!

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