Why won’t you just sit down!!!

Sadly, I have heard this said a lot over the years. Care givers who have become exasperated by individuals with dementia who just insist on getting up! Shocking, isn’t it, as we all sit unoccupied for hours at a time…

Imagine if you were assisted out of bed, given your breakfast, then sat in an armchair. You need to go to the bathroom, so you get up. You’re immediately told to sit back down. You see a book you’d like to look at, so you get up to retrieve it. You’re asked to sit back down. You’re thirsty, so get up to go to the kitchen. “Sit down, please”. You see a familiar face and want to go and tolk to them, so you get up. “Sit down!” You’re hungry, so get up to reach the biscuits. “Please,sit down!” By this point, I probably would have caused a bit of a scene!

I was asked to see a patient urgently today because he was being “aggressive”. It transpired that the practitioner had been attempting to catheterise the man who was in retention – yeah, I probably would have been on the hostile side if I didn’t understand what was going on!

Sigh.

If someone gets up from a chair, they have a purpose in mind. If that person has dementia, that purpose may not be recalled after a few moments, however we are active beings and encouraging mobility in older adults is so important for many areas of health and well-being. It should be encouraged! Yes, hospital wards are busy places. Yes, there is a risk of falling. But life is full of risks, isn’t it? A five minute walk along the corridor with someone in the longer term can save time, distress, minimise the risk of hostility and the need for sedation. Understanding that the person with dementia is getting up with a purpose and trying to gain insight into what that purpose is means that they will feel heard; they will feel visible, and that they are still communicating their needs. And this will pay dividends in the longer term.

X x

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Dementia: Developing Meaningful Activities — Seeking The Good Life

A recent article from the Dementia Services Development Centre caught my eye and made me think about how we spend our time. I was particularly taken with its emphasis on meaningful activities for someone with dementia and have copied an extract below: ‘There has been a growing awareness in the UK of the important role […]

via Dementia: Developing Meaningful Activities — Seeking The Good Life

Don’t talk about someone with dementia in front of them like they don’t exist. — Dealing with Dementia

(Originally posted at “Dealing with Dementia”):

This is a deeper dive into the sixth item from my list of things to never say to a person diagnosed with dementia. This one is a bruiser–and I watched it happen so many times by people that are trained to care with individuals who have dementia, that it shocked me every time. Most often, […]

via Don’t talk about someone with dementia in front of them like they don’t exist. — Dealing with Dementia

Communication is key

I returned to work this week having had two weeks off (and relax), which were lovely, and have been busy organising the launch of the carers’ drop-in support sessions.

On my travels around the wards, I overhear amy conversations between professionals and patients, and I am always interested to hear how staff communicate with individuals with dementia.

Medics clearly document in every entry in the notes a diagnosis. This doesn’t always seem to then translate into their interactions! Other staff members know their patients are confused and disorientated, but continue to try and debate with them on their terms, rather than on the terms of the individual.

Key communication tips that I try to share:

  • Engagement – make a connection with the person. Before you even start speaking, ensure the person is aware of your presence, be on their level so that eye contact can be made. Smile! Use their name. Minimise other noises and distractions. Touch their hand if appropriate to bring the person back to you
  • Questions, questions – keep them simple! Don’t give the person too much information in one go, they won’t retain it. Even in chosing their menu, I overhear people being given four or five options in a hurried manner. Guess what? They pick the last option because they can’t remember the others. Which can then cause problems at mealtimes, because a. they can’t remember what they ordered, and b. they may not actually like the last option chosen, so arguments ensue – “I don’t like this, nurse.” “But that’s what you ordered!”, etc. I think menus should come with pictures, but that’s another topic altogether…
  • It’s the same with decision-making – keep them simple. If in any doubt about someone’s ability to make a decision or understand what is being asked, the process of capacity assessment and Best Interest decision making come into play (again, a whole other topic!)
  • Just walk away! – you really do need to pick your battles, and sometimes you need to walk away to save the person stress and upset, and return a little later/send in a fresh face/use a different approach. This isn’t always possible on a ward, however I think we need to be more accomodating in the way we work – why can’t we try to give someone their tablets at a different time? Why can’t Bill (random name) have a shave in the evening? Not everything will fit in exactly when we plan. Engaging in an argument with someone with dementia really is a waste of energy, and only causes you both to become upset, angry or distressed. Unless it is something which is putting the person at risk, go back to it later.
  • It’s real to them – their reality will not always coincide with ours. Rather than debating the facts of the matter, address the emotions – are they upset? Angry? Happy? Engage with those feelings and share them (yet another topic which I could talk about for hours!). Validation rather than orientation lets the person know you’re hearing how they feel, which will make them feel safe.

X x x

Ripples of excitement

Today I visited a group of carers who I may be volunteering with in a few weeks – what an amazing group! So many stories of courage and resilience, and so mutually supportive. I was touched by how welcoming they were, and that some told me their stories despite having only just met me.

This afternoon, I met with a friend whose parents are in a care home; her mother’s needs are being reassessed to decide whether she needs nursing care. My friend was clearly distressed by the whole situation, and again I was touched by her openness with me.

This has struck a chord, and I want to move forward and work more closely with carers, supporting them in supporting their loved ones. I’m putting it out there, and hoping that this will help things move in that direction; inspire me as to how I can make this calling a reality. I am excited to see what happens next!

I am away for a few days, so will be “off grid”, but look forward to catching up with you all soon.

Take care, lots of love,

Anna x x

Orchestrating a Musical Conversation

Music when caring for someone with dementia is such a magical way of connecting 😊 x x

Dementia Journey by Deborah Shouse

imagesWhen Ron’s dad was living in a memory care unit, Ron and I talked with the residents and their families, learning about their favorite songs. We orchestrated a sing-along and had fun working with everyone and putting together a scrapbook of each resident’s special tunes. The combination of music and conversation created a sense of community for us all. Julian West, who we met on a recent trip to London, is creating community through engaging people in music and dance. We really love the way he weaves the two art forms  together and wanted to share his easy and adaptable ideas with you.

Julian West had no idea what would happen at the care facility, but he trusted it would be something wonderful. An accomplished oboist and a teacher at the Royal Academy of Music, Julian assembled a violist, a composer, a dancer, and an artist to share energy and their…

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Another project!!

Hello! I hope you are all well and that Monday has been kind 🙂

Today I met with one of the volunteer coordinators at a local organisation called 1Community (the link to their website is on my homepage). On reading their newsletter last week, I saw they were looking for someone to offer “emotional support” at their weekly carers’ group in the town. Now, I work full-time, have a family and household to organise, but this jumped out at me. It will be 2hours of my time on my day off.

The Carers’ Centre at 1Comunity is lucky to be in receipt of Lottery funding, but that it all! There are so many carers out there needing someone to just listen to them as individuals. As they “work” 24/7, how can I not give up two hours every couple of weeks? So tomorrow, I’m popping along to the group informally, to meet the lady who runs it and to find out what they would want from me.

I am not a counsellor, or a magician with a wand to make it all good (more’s the pity!), but I can listen.

Have a good evening, all x x

Dementia: Top Tips For Living Well

A fabulous resource for carers of those with dementia, lots of great tips x x

Dementia: Sharing The Good Times

“Our Top Tips” to Living Well with Dementia – Scottish Dementia Working Group @SDWG

During the summer of 2015 the Scottish Dementia Working Group (SDWG) and Lynsey Robertson-Flannigan the Alzheimer Scotland Occupational Therapy intern formed a ‘Top Tips’ subgroup. The aim of this group was to co-produce a peer to peer resource of tips and strategies for people living with dementia.

The SDWG members have over the years collected strategies and tips which they have found useful in helping them to live well and independently with dementia. Their desire was to share this knowledge, enabling others to maximise their quality of life by being ‘all they can be’ (Dementia Skilled Improving Practice 2016).

Image of the group hard at work sharing their ideas.

The outcome of the group was to develop a resource of all their ideas. After a few brain storming sessions, a booklet of “Top Tips” was developed and the tips were themed into these areas:

At…

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Don’t correct or challenge trivial things.

Another great article – words of wisdom from experience x x

Dealing with Dementia

trivialThis is the third item from my list of things to never say to a person diagnosed with dementia. It took some time for me to learn this and I feel like its a partner to tip #2 to not say “remember” — they go together.

I recognize this “don’t” is sadly one of my righteous habits. I know that it has softened over time but growing up in a smarty-pants family where debate was encouraged, we got in the habit of pulling apart arguments plank by plank.

When mom and dad were driving, forgetting to pay bills, and calling me over-and-over to ask the same questions like “what day is it?”, I thought pointing these things out as a failing would help them finally sell their town home and move into the retirement community full time. Oddly enough, they recognized that their spouse was doing poorly, but never…

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