To help with dementia, you have to enter your loved one’s reality

There is no cure for the 200-plus types of dementia, so how do you manage your relationship with a loved one who is suffering? Photo / 123rf

It can be fearsome and difficult to see a loved one changing — but there are ways to connect with them.

A big misconception is that dementia is part of ageing. Misplacing things, or forgetting to pay a bill, often comes with growing older — because our brain doesn’t tend to function as well at 80 as it used to at 21. But that’s not dementia. Dementia is a progressive condition that causes gradual cognitive decline that may affect personality and the person’s daily living. It’s an umbrella term — there are more than 200 types — and all affect memory. There is no cure, although medication can sometimes help with the symptoms.

What often happens is that a couple are plodding along together at home. Over time, one partner has started to take over some of the tasks that the other is no longer very good at. It might be, “You always make a mess when you cook. So I’ll do it.” And so it goes on. No one else sees it happening. The more-able partner doesn’t even see it because it’s their daily reality — like the note stuck on the fridge that you simply stop seeing, even though it’s neon pink.

Then a son or daughter visits and they haven’t seen their parents for, say, three months. And immediately it’s, “What’s going on with Dad?” “Oh, it’s just your dad.” But it’s not “just Dad”. They can see that something is going on. We think of the big things that might suggest dementia, like wandering out at night or forgetting how to start the car. However, the brain is incredible at adapting and compensating. So it’s likely that, by the time a big thing happens, the person is further along on their dementia journey than they — or anyone else — realises.

Alzheimer’s, the most common form, tends to progress slowly with subtle changes over time. Vascular dementia, another common type, usually means a sudden change brought about by something like a TIA (sometimes known as a “mini stroke”), followed by an almost-full recovery, until the next sudden change happens. Other physical conditions, such as a UTI or even a blood disorder, can present in similar ways to dementia. It’s important to rule these out.

Connection is key

Dementia can throw up a lot of fear, both for the person living with the condition and their loved ones. Being honest, it can be devastating. But I see people, sometimes with young-onset dementia, standing up at conferences and talking about how they are managing their lives. Because everything doesn’t stop when a person has dementia. Someone might say, “Dad doesn’t know who I am,” or, “Mum’s not there anymore.” I’ll say, but look how delighted they are to see you. If you adjust by entering into their reality, you can still enjoy being together.

Human connection remains crucial for individuals with dementia, even if verbal communication is limited; engaging through touch, music, or shared activities is vital. Photo / 123rf

We must remember that human connection is the most important thing any of us has. It’s not only possible, but crucial to connect with the person living with dementia, to help them to live well. While they might not be able to communicate verbally, you can still sit with them and hold their hand. You can whisper in their ear or play their favourite music. Their response might be to squeeze your hand, or you may notice a softening of their facial muscles or a subtle change in their breathing.

It is important to enter their reality. This can be difficult if, for instance, your mother says, “I want my mum.” But this is her reality, and if you can explore it, you might be able to understand where it’s coming from. Perhaps your mum is back in a time before she had a husband and children. So to her, her mother is very much alive and present in her mind.

How you respond depends on the person. If there are fluctuations, and sometimes periods of more understanding, you might say, “How old are you, Mum?” She might reply, “Oh, I’m 85. My mum’s passed, hasn’t she?” However, if your mum is in a place where she’s back in the past, perhaps at school, your response might be suited to where her thought process might be at that time. You might ask, “Do you think she might be at work? Or shall we walk together to see if we can find her?” During that time you can distract her thought process and hopefully help to relieve the anxiety she is feeling.

You’re not lying to your loved one. You’re diverting things in the hope of avoiding any trauma. To insist, “Your mum’s dead” to someone who believes very firmly that she’s back at school would be like telling an actual 15-year-old girl that her mother has died. It would be deeply traumatic. Therapeutic lying, as it’s sometimes called, can validate what the person with dementia is thinking and feeling, and support the opportunity to maintain their wellbeing.

There’s no doubt that it can be extremely difficult to see a loved one changing. A once-kind-and-loving person might become frustrated, depressed or present verbal and physical distressed behaviours. Humans react to stressful situations through fight-or-flight reaction, and as cognition declines, they might not be able to express themselves verbally. But when feelings become overwhelming the person finds other ways to express them — and that might be by shouting, swearing and becoming confrontational towards items and people in their environment. It can be extremely frightening, both for the person living with dementia and everyone else involved.

Families also find it difficult when a loved one starts to show evidence of sexualised behaviour. It is a taboo subject, and for a son or daughter to experience their parent exhibiting this behaviour can be embarrassing and shocking. To see Mum, for example, holding hands and kissing other male residents in the care home, or identifying these people as her husband, can be difficult to accept. However, this comes from seeking closeness and love, which makes us feel safe. The yearning for connection is a basic human desire, and as carers we find ways to manage that.

Just because a person is living with dementia, it doesn’t mean they can’t make informed decisions about their own life. They may still be able to enjoy a genuine, meaningful relationship, where both parties want to feel loved, and enjoy a cuddle.

Being diagnosed does not mean the person no longer has capacity. This is assessed regularly as a person progresses along their dementia journey. We must also remember that every person has the right to make bad decisions — and it’s our role to reduce the risks.

There can be a lot of guilt over “putting Mum in a care home”, as people often express it. However, in their own home the person can become isolated and lost to society, and in a care home there are people and friends, and carers become like a second family. If you’re the carer, it’s likely that you’re also doing their cooking and cleaning and it’s 24/7 — and actually, all they really want is for you to sit down and talk. When your loved one is in a care home, that can happen. You can have a meaningful engagement again.

Placing a loved one in a care home can provide social connections and engagement that might be challenging to maintain in their own home, reducing isolation. Photo / 123rf

It’s not all sadness and trauma

There’s a lot of fear around dementia, because if your great-grandmother, your grandmother and your mother all had it, then there is the possibility that that will be your future too. I believe in being proactive rather than avoiding the issue, and not leaving it too late. In my early 50s I had a power of attorney put in place so my adult children will be able to take care of my welfare and financial matters, and I have a will. It’s also important that others know our life story — who we are, and what’s shaped us. Don’t leave it too late to capture these memories for the future.

For instance, I’m a fitness fanatic. In the future, if I’m marching furiously around the corridors of a care home, I’ll want those around me to know I’m just getting my 10,000 steps in, and if they give me a water bottle and an energy bar I’ll be fine.

Imagine yourself in another country, far from home, where you don’t speak the language. If you were given a piece of paper and asked what’s most important about you — what makes you, you — what would you write down? What would you need these people to know about you, to support your care?

Although the brain might be ravaged by dementia, the person can still experience love, joy and happiness. I always say, “Put yourself in their shoes.” We should never assume it’s okay to walk into their room and take something from a cupboard without asking, or use terms of endearment unless we know that’s okay too. We shouldn’t condescend or resort to infantilising — “Oh, Mr White! You’ve got crumbs all down your jumper!” Nor should we assume a loved one is “making things up” if they tell us outlandish stories. My children don’t know everything I got up to when I was young — and those long-ago memories can surge back to the surface.

I’ve heard people say, “If I get dementia I want to be given a pill and die.” I don’t feel like this at all because I know dementia is not all sadness and trauma. There’s great joy, humour and laughter to be had too. The main thing we can do when someone has dementia is find the key to communicating with them. It might be by looking at photographs, and saying, “Look — here’s you with your mum, dad and brother. You went on to get married and had all those beautiful children and we all love you.”

We can’t get back what’s been lost. We know that’s impossible. Your loved one has changed — but they are still very much there, with all their interests and passions, their stories and experiences that make them who they are. We need to connect with how they are now, and build on that.

As told to Fiona Gibson