The week before Christmas I had the privilege of being interviewed on Premier Radio about dementia and encouraging those who are looking after loved ones with dementia over the Christmas period.
There is much more that could have been said so here I summarize, and expand, in 3 key points. I hope you may find them helpful and encouraging as we enter into the New Year.
1) Make the most of each moment
The book Still Alice has a beautiful quote expressed as if from the mind of somebody with dementia:
“My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment… I will forget today, but that doesn’t mean that today doesn’t matter.”
― Lisa Genova,
In the interview I used an analogy from the Dementia Friends training in relation to spending time with a loved on with dementia on Christmas Day:
Each of us has a metaphorical book case standing either side of us. One is full of memories and one is full of emotions. The one full of memories is quite wobbly, and as dementia sets in, it shakes that bookcase and the memories from the top start to fall off. But the emotional bookcase is really sturdy.
At Christmas, you may have had a loved one with you and thought, ‘What’s the point? They don’t know who I am, they’re not going to remember that they came here yesterday’. But the time that they have in that moment on Christmas day, the emotions they have and feel will carry on.
Keep hold of making each moment meaningful for you and your loved one. Enjoy that emotional connection that you can have, whether or not the memory of the specific activity is going stay for very long.
2) Remember the person behind the Dementia diagnosis
Does your loved one seem to be a different person now? Are they exhibiting behaviours you know they would never have dreamed of doing or saying before?
Remember who that person was, who they were to you for their whole life until that diagnosis. They are still the same person.
Familiarity and routine are key for people with dementia.
What can you do to stay in touch with that person?
When a loved one is not able to communicate verbally, other senses can be fantastic channels of expression and connection. Use familiar and comforting smells, sounds, songs, catch phrases, textures etc. These can all provide meaning for you and your loved one in that specific moment.
Using sensory input can also be a great way of helping to keep someone stimulated and interacting.
Talk about the past – it’s what everyone loves to do right?!
By talking to your loved one about special memories of holidays, Christmases, weddings etc. you are keeping touch with who they are – remembering the person at the heart of the dementia diagnosis.
Surround your loved one with objects, music, smells, anything that will trigger happy memories and facilitate your conversations – or simply bring a smile to their faces.
3) If you have faith in God nothing can separate you from his love
Premier Radio, the station on which I had the interview, is a Christian radio station with many listeners having a Christian faith. I really wanted to encourage those whose loved ones with dementia also had faith, during their lives before their dementia diagnosis.
I’d like to remind any one reading this, who has a loved one with dementia who has had a faith – the Bible tells us that nothing can separate us from God’s love. In Psalm 139 the author asked the question, ‘Where can I hide from God?’ and follows with the answer: nowhere.
God is bigger than any illness, including any illness of the mind. He is beyond our human abilities to connect and show love. His love and compassion for people with dementia is unending.
I’d like to end with a story of a man I worked with in a care home. This man had been a Christian for most of his adult life.
In the home, he would often be withdrawn and aggressive; people were almost scared to go near him for fear of being hit or kicked. He spoke occasionally but never coherently.
One Sunday afternoon I played some old hymns on the piano in the lounge of the care home. To my surprise this very man started to hum along. When I turned around after finishing one piece he had tears of joy streaming down his face, he took my hands and said “thank you, thank you, thank you”.
I don’t know what he was experiencing, or what he was thinking, but I know he hadn’t lost his faith, and God hadn’t let go of him.
I don’t have any personal experience of loved ones having dementia. I do, however, have a few years experience with some wonderful memories and stories of how the suggestions above have made moments meaningful and given quality of life to people in my care, even if just for a moment.
So my final encouragement is this:
Don’t despair. Remember who your loved one is, behind the dementia – make each moment meaningful – and if they have a faith, remember God will never let go and is so much bigger than the illness.
Presenter: Now, this time of year is often about celebrations and joyful rejoicing but if someone in your immediate or extended family has dementia it can dampen spirits. Perhaps they are at a point on the journey of the illness where they get very forgetful or confused or maybe they’re just not sure who they are any more.
How can we factor these loved ones who in reality become a huge challenge when it comes to family gatherings, and keeping yourself free from too much emotional turmoil and your family free from arguments.
Naomi Gallant is an Occupational Therapist who is currently undertaking a PhD in dementia care and erm is doing this PhD where she’s looking at dementia care in hospitals – good morning to you Naomi.
Presenter: Hi how are you doing this morning?
Naomi: Yeh fine thank you.
Presenter: Good good good, so you work, you specialise in dementia care. How long have you been doing that for?
Naomi: Erm probably about four/five years now since I first started working with people with dementia, and I’m two years in to my PhD.
Presenter: Oh right so you’re going to be soon Doctor Gallant.
Naomi: Well, yeh, a couple more years!
Presenter: A couple more years. Just for those of us, because I did a documentary in September where I looked at dementia, and I was surprised that there are lots of different types of dementia aren’t there. Just explain to us what dementia is.
Naomi: Yes so dementia is… it’s an umbrella term describing lots of symptoms that fall in to different illnesses, so like you say there’s lots of different types of dementia, Alzheimer’s being the most common, the next vascular dementia, and it’s just a disease of the brain, and the connections and messages in your brain are being broken down or disrupted in some way, for various different reasons.
Presenter: So how does it affect people?
Naomi: I think the most common, the most well-known, one is the memory loss, and that’s often the first thing that people start to notice you know, starting forgetting places, people, names, but as it progresses often it starts to affect people’s ability to do basic tasks, so to get from A to B, to make a drink, work the phone, and really, like I say, the messages and the connections in your brain are breaking down so gradually you’re losing the ability to do the things that we all take for granted, and that often can create all sorts of other symptoms, of behaviour and coping in certain ways.
It’s physical as well, you know people often lose… they’re more likely to fall over or they may get depression, and other sorts of symptoms like that.
Presenter: So you’re doing research in to improving the care for dementia patients and er what’s your motivation for doing that? Because you don’t have any personal experience of dementia, do you?
Naomi: No, not in my family I don’t, I don’t have that emotional, personal sort of experience, but I started my work with people with dementia by working in a care home, which was specialised for people with dementia, and I just fell in love with the job really, and the difference you can make in people’s lives by just making each moment count for them, in the way you are with them. It just gave me a passion to want to carry on doing that. And then as I developed in my sort of occupational therapy career and started working in hospitals and realised just how much more is needed to make care better for people with dementia. So that’s my driver really.
Presenter: Mm. Can the type of care a relative gets kind of cause divisions in the family? I mean, I know from my own personal experience, my grandad had dementia, my mother in law has it now. Getting a diagnosis does take a long time, doesn’t it?
Naomi: It can do, yeh, and often that time just post-diagnosis can be a really difficult time, because people are still in those really early stages and it might be that the health service isn’t really resourced to pick up those really early on, and so people are left confused and not really knowing where to go, I think.
Presenter: Yeh I think that, coz there’s a few stages, and you can get your GP involved and you’ve got to make sure that they’re on the right meds, that they have a memory test and they might have a CAT scan to determine whether it’s alzheimers or vascular dementia. Just explain the difference between those two forms of dementia?
Naomi: Alzheimers is a lot slower in deteriorating, so it’s sort of very progressive, it has the typical what we all know as the memory loss to start with, and slowly people decline over a few years. Vascular dementia is more to do with the blood supply to the brain, so people often have what we describe as sort of mini-strokes, and as they happen the damage from that stroke can damage the nerve connections. And so you might see a presentation which is a lot more people plateauing and then suddenly drop in their abilities and their behaviour will change very suddenly, and they may stay at that level and then drop again and that’s just the nature of what’s going on in the brain really.
Presenter: And for those, families tend to get together at Christmas, and they may not have seen a grandmother who has it, or a relative who has dementia, and they may have gone down quite a lot since the year before when they’ve seen them. And it can be quite a shock, can’t it?
Naomi: Absolutely yeh, especially if you haven’t spoken or seen that person for a while it can be a really noticeable difference. I guess the key thing to remember is think about who that person was and were to you in their whole life up until that dementia diagnosis, and sort of keep in touch with who that person is, because that person’s still there, they’re just behaving in a different way.
Presenter: When you say behaving in a different way, how does it, you often hear of people who are going through, who have dementia, the family members will tell us that their core personality seems to come out, whether they’re bitter about something in their life, or they’re angry, or it might be that they’re the complete opposite, that they just laugh a lot. Why is it different with different people, that you tend to see the negative and the positive aspects of it?
Naomi: I think just people are different, and each of us are wonderfully made in our own different ways, so I think we’re all gonna be different and that just emphasises really that that person is still there, and that can be why dementia care can be so difficult because everyone is so different.
Presenter: What would you say to relatives who find the process of caring emotionally draining and even that it detracts from the joy of celebrating Christmas with the whole family?
Naomi: Erm I think I’d go back to that person that they are. If I can use an analogy that the Dementia Friends (link) use in their training, which is about when someone has dementia, it’s like we all have two bookcases either side of us in our life. One is full of memories and one is full of emotions. And the one full of memories is quite wobbly, and as the dementia sets in, it shakes that bookcase and the memories from the top start to fall off. But the emotional bookcase is really sturdy.
And so someone can have an experience, say, for example, at Christmas, you may have a loved one with you and you may sort of think what’s the point, they don’t know who I am, they’re not gonna remember that they came here yesterday, but actually the time that they have in that moment on Christmas day, the emotions they have and feel then will carry on. I think, just keeping hold of making each moment meaningful for you and your loved one, so, enjoying that emotional connection that you can have, whether that’s gonna stay in their memory for very long. They’re still going to be having that quality at that moment.
Presenter: And just finally, what advice would you give to those with relatives who have had a faith, about keeping them plugged in to God at this time of year?
Naomi: So do you mean people who have dementia, who have had a faith?
Presenter: Yeh, that’s right, yeh
Naomi: I think, so for me, Romans 8 really stands out for me, where it talks about nothing separating us from God’s love. You know, God’s love, and that relationship that we have with Him when we commit our lives to Him, that’s bigger than a dementia diagnosis, that’s bigger than any illness, whether that’s a heart attack, a broken leg, or an illness of the mind.
You know, in Psalm 139 it says, ‘Where can I flee from your presence, God,’ and that’s nowhere. And I just think, we don’t know what’s happening inside the mind of someone with dementia, once they can’t express that any more, but I think just to hold on to the fact that nothing can separate them from God’s love that they’ve known, and just pray that they’ll continue to feel that.
I think that never underestimate the power of music as well, how, you can really reach where people can remember through music. I remember a lady I was helping look after and she was very agitated, very distressed, she’d cling on to you, and shout out, walking around the home a lot, and I just sat down with her with one of the old Sunday School hymn books and sung some hymns with her and she sat with me for half an hour and she was swaying and sometimes singing along, eyes closed, and she was just peaceful for that time. I just think, hold on to those moments and remember that God is still there, even, He’s above the illness.
Presenter: Yeh, good advice, thank you so much for that Naomi, that’s Naomi Gallant, she’s an occupational therapist with Dementia Care Research, and what is your web address?
Naomi: It’s www.dementiacareresearch.com, and I’ll be writing a blog about this so I can expand perhaps a bit more, if people have other questions.
Presenter: Well thank you so much for that and have a wonderful Christmas, won’t you Naomi.
Naomi: Thank you, you too.
Presenter: Thanks very much take care, God bless, that’s Naomi Gallant there and she’s an Occupational Therapist for Dementia Care Research and she’s doing a PhD looking at dementia care in hospitals and her website address is www.dementiacareresearch.com.