By Jane Verity ©dementiacareinternational.com
When you care for a person with dementia you are bound to experience situations that present challenges due to the resulting clash of your two different realities.
How do you respond when:
- George tells you that his toy dog is sick?
- Lilly asks for her husband, Ron, who passed away several years ago?
- John keeps saying he wants to go home?
Great confusion and uncertainty exists over when or whether to tell the truth or a white lie. I would like to explain and clarify here why neither of these approaches is desirable.
Firstly, let us introduce the DCA Reality Model; illustrated as follows:
Right Circle – Reality of People Who Have Dementia
People with dementia lose their logical and the rational perception of reality. Instead, they experience reality through their imaginations, senses and intuition. This new reality is often colourful and free-flowing with no limitations. They may recreate a past memory, such as: their mother, a job or role in society. This memory comes alive in their imagination and becomes the reality in which they live and interact.
Left Circle – Reality of People Who Do Not Have Dementia
In contrast to people with dementia, most other people use logical and rational thinking to create and interpret their reality. This factual reality is limited by strong boundaries and set rules of what is real and what is not. In this factual reality, talking with a deceased person is perceived as make-believe and therefore not true.
The way we choose to respond to the realities of people with dementia will determine how they are going to feel and react. Our response has the power to either create joy and comfort or deep suffering and anger.
In the everyday care of people with dementia, two distinct response techniques are often used:
1. Telling the truth as “it is”.
2. Inventing a white lie.
Telling the Truth as ‘It Is’
If you tend to use this approach, it may be grounded in strong ethical beliefs and a conviction to always tell the truth.
When suddenly faced with one of the above situations, naturally you will tell the person what you experience as the truth about their reality. You will most likely have empathy for the person when you respond;
- ‘George, you don’t need to worry. Your dog is not sick. It is only a toy and therefore cannot feel any pain or discomfort.’
- ‘Lilly, Ron is not coming in today – he passed away 4 years ago.’
- ‘John, you can’t go home. This is your home now and we are here to look after you.’
If you’ve ever used responses like these in similar situations, most likely you found that telling the truth did not elicit a positive result. On the contrary, it may well have broken the person’s spirit. Try thinking back to a similar situation and be really honest with yourself. What was the person’s reaction? Was it sadness, irritation, anger or aggression? Did the person call you a liar?
The Clash of Realities
The reason telling the truth does not work in these situations is simply due to the clash between your two realities. What you perceive as the truth does not match the perception of truth by the other person. This resulting clash can create tension.
When Telling the Truth is your Best Approach
However, there is a time when telling the truth is definitely the most successful and correct approach.
When a question is asked about your reality – and only your reality – you need to be totally honest. A person with dementia may ask when you are coming back, or how was your weekend? In these situations, the best approach is always to tell the truth. Be honest about the time or day you will return; whether it is in an hour, 2 days or next week; or that a close family member passed away on the weekend, which is why you are a bit sad. You can safely acknowledge your true feelings without going into all the details.
When you tell the truth about your reality, your voice and facial expressions all back up this truth. Even if the person with dementia would have preferred a different answer, they will pick up on your honesty. The trust you have established between you will be reinforced.
In the past you may have chosen to respond with a small white lie such as, ‘I’ll be back in a minute.’ The person with dementia would have known in an instant that you weren’t telling the truth. Any trust you had built between you would have been lost.
White Lies
You may have been taught that it is okay to tell a small white lie to the person who can’t remember. At first glance, white lies can seem like a simple solution to difficult and challenging situations. You may have even had a positive experience in stopping certain behaviour – at least for a while. Sometimes, too, the telling of a white lie can be seen as the most caring approach to ease a person’s pain.
If this has been your training and you are suddenly faced with a situation similar to those mentioned earlier, you will most likely use a small white lie to get around it. You may step into the reality of the person with dementia and use creativity to come up with your answers. Of course, you will show empathy and warmth in your voice when you respond:
- ‘George, what if you give the dog to me and I will take it to the vet for you?’
- ‘Lilly, Ron has phoned to say he is busy but he will come in later.’
- ‘John, yes, you can go home. The bus stop is just outside in the garden.’
However, if you’ve ever used any of these responses, most likely you will have experienced that while a white lie may stop the behaviour momentarily, the same behaviour almost always returns, sometimes even stronger and more persistently. The white lie may leave the person feeling manipulated, confused or angry.
Why White Lies Don’t Work
White lies only deal with the face value of a situation, not with the underlying needs and feelings. More often, they can leave the person feeling that we don’t care and only want them out of our hair. This approach destroys the trust that you have built between you. A white lie cannot create a long-term solution because it does not meet the underlying universal emotional need.
If you ask yourself: Have I ever used a white lie to manipulate a person into doing what I would like them to do? What is your honest answer?
You know very well that you’re not going to take George’s toy dog to the vet, but, by creatively removing the dog, you hope that once it is out of sight, he will forget and the situation will disappear. However, the sick dog represents the fulfilment of several of George’s universal emotional needs. When you remove it without having found other ways to meet his emotional needs, you leave a vacuum. Most likely what will happen is that one of the other toy dogs will ‘get sick’ and George will then become worried about this dog and ask for your help again.
Finding Resolution
The challenge is to find a way in which the two contradicting realities can co-exist in respectful harmony. And there is a way! In between your Factual Reality and the Limitless Reality of the person with dementia lies the Shared Realm of Universal Emotional Needs. This is the common ground of human life experience and the key to resolution. Here you will always be able to find answers to the many challenging questions you come across in your care of people with dementia.
This is where everything is right and nothing is wrong and where the two of you can meet as universal beings, because everyone experiences these same emotional needs. It is not a question of truth or lies, only one of empathy and compassion and of recognising the same needs in the person you care for as those you experience yourself.
The Spark of Life 5 Emotional Needs
People with dementia are usually very well cared for physically, however, their emotional needs are often overlooked. Meeting these needs is the key to preventing suffering and to providing truly enriching experiences.
These unmet emotional needs are:
- To be needed and useful
- To have opportunity to care
- To love and be loved
- To have self-esteem boosted
- To have the power to choose
Our emotional needs don’t disappear just because we grow old or have dementia. The only thing that changes, especially for people with dementia, is the opportunity to have these needs fulfilled in a meaningful way. You’ll be amazed how often the challenging behaviours you come across are linked to these needs. In fact, many of the behaviours we think of as symptoms of dementia can actually be traced back to unmet emotional needs.
What’s Really Going On?
When these emotional needs are not met, the person does not just give up. Instead, the person with dementia has an incredible way of compensating for what is missing. In his or her imagination, the person recreates a time when these needs were being fulfilled and then brings the memories to life.
These memories fall into 4 categories:
- significant people or animals
- significant places
- significant situations
- significant objects.
To illustrate this, let’s go back to the three real-life situations described earlier.
When George says his toy dog is sick, it is absolutely real for him. In his younger days, he started an animal refuge, which is now a highly regarded facility. In his imagination, George recreates memories of his dogs.
When Lilly asks when her husband Ron is coming, he is fully alive for her. He was her beloved husband for 58 years and, until his death 4 years ago, was always by her side, ready to help and support her.
When John asks to go home, his house is absolutely real for him. John built his family home in the country and it was his pride and joy. He maintained it in immaculate condition, which kept him very busy. He and his wife lived there until 7 years ago when they moved to the city. In his imagination, John recreates this home.
5 Steps to Discover Unmet Emotional Needs
Once we understand the direct link between recreated memories and unmet emotional needs, the following simple steps enable us to explore the underlying cause:
1. Know the Person
The more you know about the background and life experiences of people with dementia, (people, loves, jobs, memberships, roles, successes, hardships, losses etc) the better equipped you will be to find the meaningful reason behind their behaviour. To understand, it is vital to know that George used to run an animal refuge or John built and maintained his own house.
2. Accept that Everything is Right; Nothing is Wrong
This is one of your most powerful tools. Yet, while it is easy to say, it can be a challenge to carry out. You need to acknowledge that what the person is saying and doing is absolutely right.
Instead of zooming in on George’s dog only being a toy, you need to stay calm and acknowledge that for him this is important and right and that there is a meaningful reason behind his behaviour.
3. Prepare Yourself
Preparing yourself mentally helps you be in the moment’ and free from all thoughts that might prevent you from tuning in to the person. To do this you need to:
- Let go of your factual interpretation of reality – your truth
- Go beyond the face value of the person’s reality – his/her truth
- Keep an open mind
- Take 3 deep breaths (in through your nose and out through your mouth).
4. Use your Intuition
Intuition is the lightning-fast gut response you get when asked a question or faced with a situation.
I have found through working with people with dementia that trusting my intuition is one of the most helpful tools towards discovering how they are feeling and what they are thinking and attempting to communicate.
Trust your intuitive response and explore it with the person. It’s not the usual way of finding solutions in society today, but it works, and that’s all that matters.
5. Step into the Other Person’s Shoes
To step compassionately into the other person’s shoes means to see with your heart and holding a true desire to enrich that person’s life.
The key questions to ask here are:
- What unfulfilled emotional need is the recreated memory compensating for?
- What is the person attempting to communicate?
Bringing it All Together
George no longer feels he has a role, an identity or meaning in his life. Recreating memories of the animal refuge boosts his self-esteem and restores his feelings of being needed, useful, able to care, and of giving and receiving love.
Lilly is lonely and feels unloved. Recreating her memories of Ron, her husband, helps her experience love and support.
John feels bored and useless and lacks purpose in life. Recreating the memories of the special home he built and maintained instils pride, helps him feel needed and useful, and boosts his self-esteem.
Your Successful Response
Once you have discovered a person’s unmet need, or specific underlying cause, use the final 3 steps to elicit a successful solution:
- Think creatively about how best to meet the person’s needs.
- Acknowledge the need and invite the person to be involved.
- Check the involvement is truly making a difference and meeting the person’s needs.
Remember, you can’t produce what the person recreated in his or her mind and you don’t need to. Instead, look for solutions within the present environment and accept the constraints this brings.
To illustrate this, let’s revisit the three situations already mentioned by looking at some creative solutions which address the underlying cause and create mutually enriching experiences.
Introduce pets to George’s everyday life and ask him to help look after them. Ensure he receives only the support needed, so he can experience success. Hang bird feeders and place bird baths that he can fill and clean. These are daily jobs that need love, care and attention.
Now when George says his toy dog is sick, you can respond genuinely and sincerely: ‘George, your care and concern for the dog are absolutely wonderful. I know of no-one else who cares so much. We’ve been looking for someone who could help us look after our cat (or birds or whatever you have). Could I ask you to help? Would that be okay?’
Lilly is missing love and support. Ensure that only a few key people care for her so that they can get to know Lilly and discover a real insight into her as a person, her family and her life. Empower these people to adopt Lilly as their special person and encourage them to provide small random acts of kindness (such as bringing her little gifts of poetry or a piece of homemade cake).
When Lilly asks for Ron, you could respond, ‘You really miss Ron. What a special man! You two have the most enduring love for each other and because you love Ron so much, I have brought a special friend for you to meet and a beautiful poem about love. What if I make you both a cuppa and you can share the poem and your special memories? Would that be okay?’
Now You Try!
John needs to feel useful and needed and have his self-esteem boosted. What real jobs can John do? How can you adapt some of these to suit his abilities so he can feel purpose and useful?
Now when John says he wants to go home, you can acknowledge this; then address the underlying, unfulfilled need by offering your suggestions. (Remember to thank him sincerely afterwards, saying how he has helped.)
Summing Up
Below are the 8 steps combined to provide a sound basis for choosing appropriate responses when you are with a person deeply involved in a different reality. By consistently implementing these steps they will become second nature.
- Know the person and their background.
- Accept that everything is right, nothing is wrong.
- Prepare yourself.
- Use your intuition.
- Step into the person’s shoes and ask yourself compassionately, ‘What unfulfilled emotional need is he/she compensating for?’
- Think creatively about how best to meet the person’s need.
- Acknowledge the need and invite the person to be involved.
- Check the involvement is truly meaningful and meets the need.
By tuning in to the person’s unmet emotional needs and finding creative ways to help fulfil them, you will both experience something truly wonderful. Once you meet the person’s needs, the previous difficult behaviour will disappear. People with dementia always prefer to have their needs fulfilled in this reality rather than resort to their memories. The challenge is to enable them to do so.
Further reading
- Different Realities – Community story – Paddy Spruce CSP (Read Paddy’s testimonial & learn how Jane’s Truth or Lies – Crossing the Great Reality Divide article gave him perspective into a way of meeting the needs that lie between two differing realities; & his new insight into his elderly mother’s ingenious way of telling him that she was feeling lonely.)