BEING AND REMAINING IN CONNECTION
with the physical world and selves
reconnecting with the world around them
Mark Huntsman: ‘Providing the most effective care means maximizing the opportunities these individuals have to reconnect with a world they’re losing access to’
https://www.alzheimers.net/montessori-method-dementia
Gaynor: Charlie loved photos. We would spend many hours going through them. In the early stages, we could talk about the places and people in them. As his dementia advanced he could recognise most of the people he was close to but maybe not the places or stories, and maybe not the names. And in the later stages, he may not have known ‘who was who’ – although sometimes it seemed he may have – but he still enjoyed going through them. Everywhere we went I took a boxes of photos for him to enjoy. And then he started cutting around them – he was always good with his hands, and he would neatly clip off the corner, to make them look nice, or would cut off someone he didn’t recognise and leave the person he did!
This is Charlie going through a photobook we made of Charlie working with his Dad when he was in his twenties. He is enjoying this time with his granddaughter, Natalie Anderson. His Alzheimer’s was very advanced by then but his photos were a wonderful way for him to connect, and others to connect with him. And what did it matter if he didn’t actually remember the people in them! The real enjoyment, after all, lies in the sharing.
These photos of Charlie were all taken when his Alzheimer’s was very advanced...
• With a photo of his daughter, Felicity Gay, and an orangutan! Was he sharing his dessert?
• Charlie showing someone a special photo
• Charlie going through photos with his granddaughter, Natalie Anderson
Helpful Websites/Links
While craft activities and the Montessori method aren't for everyone, their emphasis on the importance of sensory experience could be particularly enjoyable for some
https://www.alzheimers.net/montessori-method-dementia
More examples of stimulating activities can be found here :-
https://www.alzheimers.net/2014-03-06/stimulating-activities-for-alzheimers-patients/
Depending on the needs of the person with dementia, stimulating or calming sensory environments can be created by carers if desired.
https://www.alzheimers.net/3-15-17-sensory-room-for-dementia/
with the physical world and selves
touch
A moving video about vulnerability, connection and touch
Naomi Feil follows a philoosphy of validatoin therapy for older adults - see her TedX talk here and her website here.
with the physical world and selves
USING EMOTION
Coming soon!
with the physical world and selves
Movement
Dementia, particularly in the later stages can restrict a person’s capacity for movement. Keeping up our ability to move means keeping up all kinds of connections that we are able to make through our bodies – walking to the coffee shop, visiting family, eating, shaking hands, getting in and out of the car. Look after bodies as well! Our bodies help us connect with our world.
Kate: In the later stages of his dementia, I remember we were visited at the home by a physiotherapist who was there because Charlie’s mobility had decreased significantly. The therapist, a very well-meaning enthusiastic professional, had recommended we have Charlie stand-up then sit-down for three sets of ten repetitions. I chuckled to myself, thinking how extraordinarily confusing he would find it to stand up and sit down twice in a row, much less for three sets of ten repetitions! What I did instead was make use of the times when Charlie was feeling energetic. In the evening, for instance, when he became restless we would go for an adventure, walking around the house together looking for ‘lost’ objects. I always made sure he had enough energy to come safely back to his chair and that we took his wheeler so we could rest a little on the way if needed. Reflecting back, those were special moments where we really did connect.
I started taking Charlie to gym with me as I couldn’t leave him at home. Then we visited a friend who recommended using a cross-trainer – great to help people with dementia (and to ward it off). Charlie didn’t get to the cross-trainer stage but he did use the bike, the strength machines and the boxing bags! The kind manager of Balmain Fitness, Morris, let Charlie join me for free, and we had shared sessions with my personal trainer, Paula. See some fun photos of Charlie at gym.
Helpful Websites/Links
with the physical world and selves
DIGNITY
From Dementia Australia
Maintaining dignity is essential for social connection. For instance, assuming someone no longer cares about their appearance and so not maintaining it for them or speaking to people who have dementia with that all too common condescending voice. Taking the time to groom and dress people as they would have liked to be seen by others is important for social connection.
Stories
Gaynor: One day, I arranged with our professional home carer, who looked after Charlie while I was at work twice a week, to bring him to bring him to my workplace as we had a special ‘do’ and a dinner to follow. They arrived on time, late afternoon, but Charlie was in ‘at home’ clothes, had not had a shave and his hair had not been combed. How thoughtless and inconsiderate. He would never have gone out looking like that – he was always meticulous about his appearance. I am not sure if my anger was due to being mortified on his behalf or embarrassed for myself – it seemed as if I was not caring for him well enough. I was annoyed, and disappointed – and, after all, I was paying the carer. I made sure that other carers who worked for us always ensured he looked good when he left home.
Helpful Websites/Links
The following website has good tips for easily overlooked things that help maintain a person’s dignity:
https://www.verywellhealth.com/preserving-dignity-in-people-with-dementia-4130118
Dementia Australia offers this fact sheet that helps look at some of the ways of addressing communication which is essential to maintaining dignity.
with the physical world and selves
ANIMALS
For people who are comfortable with animals they can be a great way to have emotional connection. While pet therapy is becoming increasingly more common, not many people know that assistance dogs can be used to help people with dementia.
Stories
Phil has younger onset dementia and is one of the first people in Australia to have a dementia assistance dog for this reason. Sarah, his guide dog, is able to sense when Phil is feeling anxious and calm him down. She is able to keep Phil really independent as well as being great company.
Opposite: Phil speaking at a dementia workshop in September 2018, with Sarah waiting patiently with him
Gaynor: My cousin, John, looked after my aunt through her Alzheimer’s. Chance wasn’t a ‘dementia dog’ but he turned himself into one! He looked after my aunt all the time, which was a great help to John as well.
Below: Solita Macdonald, with Chance
Helpful Websites/Links
These outline some of the effects and how to access the benefits of pet therapy.
https://www.scalabrini.com.au/the-benefits-of-pet-therapy-for-people-living-with-dementia/
https://www.scalabrini.com.au/residential-care/dementia-care/
Dogs 4 Dementia
This program has now completed but there is a good video worth watching and there is some general information about the training of dogs for dementia.
https://www.dogs4dementia.com.au/overview/
Robotic pets helping people with dementia (and which discuss pros and cons)
Robotic Pets Are Helping Dementia Patients (HBO)
https://www.youtube.com/watch?v=cFvGAL9tesM
Robotic Pets Bring New Approach To Patients With Dementia
https://www.youtube.com/watch?v=K0aC9gUMm1g
Robots helping people with dementia | Wendy Moyle | TEDxGriffithUniversity
with the physical world and selves
Music
From many of the websites and research we have consulted, most show that for those with advanced dementia music is powerful.
'Music enables people to be contributors and not just recipients of care. It provides opportunities for people to reconnect with a sense of autonomy and agency, at times when they may feel as though they have little or no control because of the impact of dementia'.
Music can help to 'restore' someone to themelves, to 'reacquire . . . . their identity . . . it brings a sense of identity back to people who are often 'out of it' otherwise, music will bring them . . . into their own personhood, their own memories, their own autobigraphies'
We read that this reconnecting with one's identity whether recognised or not, makes for, at the least, a happy and joyful experience. Music triggers some sort of memory whether that is just a recognition of the song and a natural ability to sing along with it or one that someone can articulte and use as a spring board to reminisce and tell stories about themselves and others.
See below stories and tips that we have found about how music can provide a wonderful way for a person with dementia to connnect with themselves as well as provide a space for those around them to connect and have fun and/or remember with them. Enjoy!
This is a small documentary from the ABC Science YouTube channel. Watch from 1:28 to see how John lights up when music he knows is played for him.
Creating playlists
We found that many websites recommended creating a playlist with a short written descripton which is expresses why each song is relevant, liked by and a memory trigger for somebody. Remember this is not about getting someone to remember for the sake of ensuring their memory is still in tact, but instead, as the quotes expressed above, to allow a person to connect with their identity and feel a sense of joy, freedom and control because of this. Here are some suggestions and examples:
This company, Music Mirrors, give some tips on how to create a playlist
-
Start as early as you can, to give the most input and satisfaction in making a Music Mirror.
-
Talk about the good memories of life and the sounds or music that have been part of it.
-
Condense the conversation into just a few sentences, using the original words wherever possible. (This helps people to remember later.) Make it short enough to be read quickly and easily by a busy carer.
-
Once you are happy with the words, write them as an e-mail, and match each reference to music with a link to a suitable version of the music on Youtube. (see examples tab).
-
This document, with live links, can be shared or sent wherever it is needed. It can be a comfort, useful for reminiscence and information, or a wonderful gift to be shared with family
other tips and ideas
Record Young Children
If young children in your family record them singing (a voicememo on the iPhone or camera phone) and play to someone as a way to connect’
This is an amazing yet simple piece of technology - music linked to memories and objects in a cardbox speaker. It is based in the UK and quite expensive as it is a start up company - but check it out if you can.
A tip sheet on using music
Music for Dementia is an initiative of the UK health system. It looks at ideas such as:
Photo: www.musicfordementia2020.com
Humour
Many people can attest to the humorous side of dementia stories and their power to help us overcome its more unpleasant aspects. Humour is also good for people with dementia (all of us!).
Stories
Kate: I remember many times cracking up laughing with Charlie to the point of being in tears. I have no idea if he was laughing
at the same thing I was. The important
thing was that we were cracking up together.
Forgot Alzheimer Joke, by Alan, 4 November 2010. https://www.toonpool.com/cartoons/Forgot%20Alzheimer%20Joke_103579
Helpful Websites/Links
Cathy Greenblat in her photographic collection ‘love loss and laughter’ seeks to draw our attention to the ‘hearty laughter’ that is often less explored than some of the other emotions surrounding dementia
https://www.cathygreenblatphotography.com/love-loss-and-laughter
An article about the effect of comedy on a dementia patient
https://www.aarp.org/caregiving/health/info-2018/humor-alzheimers-dementia-caregiving.html
And our cartoons on this website are thanks to Meg Smith – read about Meg at:
https://www.dementia-reframed.com.au/ourpeople
BEING AND REMAINING IN CONNECTION
with the physical world and selves
reconnecting with the world around them
Mark Huntsman: ‘Providing the most effective care means maximizing the opportunities these individuals have to reconnect with a world they’re losing access to’
https://www.alzheimers.net/montessori-method-dementia
Gaynor: Charlie loved photos. We would spend many hours going through them. In the early stages, we could talk about the places and people in them. As his dementia advanced he could recognise most of the people he was close to but maybe not the places or stories, and maybe not the names. And in the later stages, he may not have known ‘who was who’ – although sometimes it seemed he may have – but he still enjoyed going through them. Everywhere we went I took a boxes of photos for him to enjoy. And then he started cutting around them – he was always good with his hands, and he would neatly clip off the corner, to make them look nice, or would cut off someone he didn’t recognise and leave the person he did!
This is Charlie going through a photobook we made of Charlie working with his Dad when he was in his twenties. He is enjoying this time with his granddaughter, Natalie Anderson. His Alzheimer’s was very advanced by then but his photos were a wonderful way for him to connect, and others to connect with him. And what did it matter if he didn’t actually remember the people in them! The real enjoyment, after all, lies in the sharing.
These photos of Charlie were all taken when his Alzheimer’s was very advanced...
• With a photo of his daughter, Felicity Gay, and an orangutan! Was he sharing his dessert?
• Charlie showing someone a special photo
• Charlie going through photos with his granddaughter, Natalie Anderson
Helpful Websites/Links
While craft activities and the Montessori method aren't for everyone, their emphasis on the importance of sensory experience could be particularly enjoyable for some
https://www.alzheimers.net/montessori-method-dementia
More examples of stimulating activities can be found here :-
https://www.alzheimers.net/2014-03-06/stimulating-activities-for-alzheimers-patients/
Depending on the needs of the person with dementia, stimulating or calming sensory environments can be created by carers if desired.
https://www.alzheimers.net/3-15-17-sensory-room-for-dementia/
with the physical world and selves
touch
A moving video about vulnerability, connection and touch
Naomi Feil follows a philoosphy of validatoin therapy for older adults - see her TedX talk here and her website here.
with the physical world and selves
USING EMOTION
Facial Expressions can really provide a great to engage with your loved one - they both show you are listening and therefore care but are also often easily recognised and resonated with. Watch this video from Teepa Snow.
with the physical world and selves
Movement
Dementia, particularly in the later stages can restrict a person’s capacity for movement. Keeping up our ability to move means keeping up all kinds of connections that we are able to make through our bodies – walking to the coffee shop, visiting family, eating, shaking hands, getting in and out of the car. Look after bodies as well! Our bodies help us connect with our world.
Kate: In the later stages of his dementia, I remember we were visited at the home by a physiotherapist who was there because Charlie’s mobility had decreased significantly. The therapist, a very well-meaning enthusiastic professional, had recommended we have Charlie stand-up then sit-down for three sets of ten repetitions. I chuckled to myself, thinking how extraordinarily confusing he would find it to stand up and sit down twice in a row, much less for three sets of ten repetitions! What I did instead was make use of the times when Charlie was feeling energetic. In the evening, for instance, when he became restless we would go for an adventure, walking around the house together looking for ‘lost’ objects. I always made sure he had enough energy to come safely back to his chair and that we took his wheeler so we could rest a little on the way if needed. Reflecting back, those were special moments where we really did connect.
I started taking Charlie to gym with me as I couldn’t leave him at home. Then we visited a friend who recommended using a cross-trainer – great to help people with dementia (and to ward it off). Charlie didn’t get to the cross-trainer stage but he did use the bike, the strength machines and the boxing bags! The kind manager of Balmain Fitness, Morris, let Charlie join me for free, and we had shared sessions with my personal trainer, Paula. See some fun photos of Charlie at gym.
Helpful Websites/Links
with the physical world and selves
DIGNITY
From Dementia Australia
Maintaining dignity is essential for social connection. For instance, assuming someone no longer cares about their appearance and so not maintaining it for them or speaking to people who have dementia with that all too common condescending voice. Taking the time to groom and dress people as they would have liked to be seen by others is important for social connection.
Stories
Gaynor: One day, I arranged with our professional home carer, who looked after Charlie while I was at work twice a week, to bring him to bring him to my workplace as we had a special ‘do’ and a dinner to follow. They arrived on time, late afternoon, but Charlie was in ‘at home’ clothes, had not had a shave and his hair had not been combed. How thoughtless and inconsiderate. He would never have gone out looking like that – he was always meticulous about his appearance. I am not sure if my anger was due to being mortified on his behalf or embarrassed for myself – it seemed as if I was not caring for him well enough. I was annoyed, and disappointed – and, after all, I was paying the carer. I made sure that other carers who worked for us always ensured he looked good when he left home.
Helpful Websites/Links
The following website has good tips for easily overlooked things that help maintain a person’s dignity:
https://www.verywellhealth.com/preserving-dignity-in-people-with-dementia-4130118
Dementia Australia offers this fact sheet that helps look at some of the ways of addressing communication which is essential to maintaining dignity.
with the physical world and selves
ANIMALS
For people who are comfortable with animals they can be a great way to have emotional connection. While pet therapy is becoming increasingly more common, not many people know that assistance dogs can be used to help people with dementia.
Stories
Phil has younger onset dementia and is one of the first people in Australia to have a dementia assistance dog for this reason. Sarah, his guide dog, is able to sense when Phil is feeling anxious and calm him down. She is able to keep Phil really independent as well as being great company.
Opposite: Phil speaking at a dementia workshop in September 2018, with Sarah waiting patiently with him
Gaynor: My cousin, John, looked after my aunt through her Alzheimer’s. Chance wasn’t a ‘dementia dog’ but he turned himself into one! He looked after my aunt all the time, which was a great help to John as well.
Below: Solita Macdonald, with Chance
Helpful Websites/Links
These outline some of the effects and how to access the benefits of pet therapy.
https://www.scalabrini.com.au/the-benefits-of-pet-therapy-for-people-living-with-dementia/
https://www.scalabrini.com.au/residential-care/dementia-care/
Dogs 4 Dementia
This program has now completed but there is a good video worth watching and there is some general information about the training of dogs for dementia.
https://www.dogs4dementia.com.au/overview/
Robotic pets helping people with dementia (and which discuss pros and cons)
Robotic Pets Are Helping Dementia Patients (HBO)
https://www.youtube.com/watch?v=cFvGAL9tesM
Robotic Pets Bring New Approach To Patients With Dementia
https://www.youtube.com/watch?v=K0aC9gUMm1g
Robots helping people with dementia | Wendy Moyle | TEDxGriffithUniversity
with the physical world and selves
Music
From many of the websites and much of the research we have consulted, most show that for those with advanced dementia music is powerful.
'Music enables people to be contributors and not just recipients of care. It provides opportunities for people to reconnect with a sense of autonomy and agency, at times when they may feel as though they have little or no control because of the impact of dementia'.
Music can help to 'restore' someone to themelves, to 'reacquire . . . . their identity . . . it brings a sense of identity back to people who are often 'out of it' otherwise, music will bring them . . . into their own personhood, their own memories, their own autobigraphies'
We read that this reconnecting with one's identity whether recognised by the person or not, makes for, at the least, a happy and joyful experience. Music triggers memory whether that is just a recognition of the song and a natural ability to sing along with it or one that someone can articulte and use as a spring board to reminisce and tell stories about themselves and others.
Much research has also been completed on the benefits of music and specifically singing on the physical health of all. Here is a very scholaraly article written by the Sidney de Haan Research Institute, pages 4 - 8 however list the many physical and health benefits of singing. These include:
relaxation, emotional release, positive mood, increased energy, therapeutic benefits, lung function and hearing
See below, stories and tips that we have found about how music can provide a wonderful way for a person with dementia to connnect with themselves as well as provide a space for those around them to connect and have fun and/or remember with them. Enjoy!
This is a small documentary from the ABC Science YouTube channel. Watch from 1:28 to see how John lights up when music he knows is played for him.
This is a wonderful individualised audio-visual program for those with more advanced dementia. It is in its trial stages at the moment. Take a look here for more information and to see how to get involved.
Creating playlists
We found that many websites recommended creating a playlist with a short written descripton which is expresses why each song is relevant, liked by and a memory trigger for somebody. Remember this is not about getting someone to remember for the sake of ensuring their memory is still in tact, but instead, as the quotes expressed above, to allow a person to connect with their identity and feel a sense of joy, freedom and control because of this. Here are some suggestions and examples:
This company, Music Mirrors, give some tips on how to create a playlist
-
Start as early as you can, to give the most input and satisfaction in making a Music Mirror.
-
Talk about the good memories of life and the sounds or music that have been part of it.
-
Condense the conversation into just a few sentences, using the original words wherever possible. (This helps people to remember later.) Make it short enough to be read quickly and easily by a busy carer.
-
Once you are happy with the words, write them as an e-mail, and match each reference to music with a link to a suitable version of the music on Youtube. (see examples tab).
-
This document, with live links, can be shared or sent wherever it is needed. It can be a comfort, useful for reminiscence and information, or a wonderful gift to be shared with family
Another example of a playlist (Reg's), as documented by Music for Dementia - a UK Health Initiative.
other tips and ideas
Photo: www.musicfordementia2020.com
Record Young Children
If young children in your family record them singing (a voice memo on an iPhone or a camera phone) and play to someone as a way to connect.
This is an amazing yet simple piece of technology - music linked to memories and objects in a cardbox speaker. It is based in the UK and quite expensive as it is a start up company - but check it out if you can.
From Dementia Australia
Music for Dementia is an initiative of the UK health system. It looks at ideas such as:
Music Therapy
'we need interventions that can highlight what a person can contribute on a social and creative level and music therapy is ideal...'
Though Music Therapy does have a cost associated with it, there are Nordofff Robbin's clinics in Australia - maybe show them this video to show them music therapy can work with lots of diffferent people! Or, get a a musical friend to enjoy time with your loved one!
Humour
Many people can attest to the humorous side of dementia stories and their power to help us overcome its more unpleasant aspects. Humour is also good for people with dementia (all of us!).
Stories
Kate: I remember many times cracking up laughing with Charlie to the point of being in tears. I have no idea if he was laughing
at the same thing I was. The important
thing was that we were cracking up together.
Forgot Alzheimer Joke, by Alan, 4 November 2010. https://www.toonpool.com/cartoons/Forgot%20Alzheimer%20Joke_103579
Helpful Websites/Links
Cathy Greenblat in her photographic collection ‘love loss and laughter’ seeks to draw our attention to the ‘hearty laughter’ that is often less explored than some of the other emotions surrounding dementia
https://www.cathygreenblatphotography.com/love-loss-and-laughter
An article about the effect of comedy on a dementia patient
https://www.aarp.org/caregiving/health/info-2018/humor-alzheimers-dementia-caregiving.html
And our cartoons on this website are thanks to Meg Smith – read about Meg at:
https://www.dementia-reframed.com.au/ourpeople