Speak to anyone working in an aged care facility and most will be able to tell you about at least one occasion when a resident asked for their deceased parent or spouse. For those who are not experienced in responding, this can be a daunting and potentially distressing question. So how do you respond? What is the best way to navigate this situation? In this blog, we will discuss why your loved one might be asking and how best to respond.
Why is this happening?
The question, ‘Where is my Mum” or “Where is Bob?” (spouse), is usually an expression of an unmet need. An unmet need in dementia care is a term used to describe any need that a person with dementia is not able to meet using their own resources. The disease process affects a person’s ability to meet their own needs due to reduced cognitive and physical abilities and impaired communication. Unmet needs can be related to:
- Pain or physical discomfort,
- Distress, anxiety, or other emotions
- The need for social contact
- Uncomfortable environmental conditions – too hot or cold; too noisy
- Or an inadequate level of stimulation.
In the instance of your loved one seeking a deceased parent or spouse, their unmet need could be related to:
- Missing that person
- A practical reason for example, feeling hungry and Mum used to prepare the meals.
- Feeling vulnerable and the person they seek gives them a sense of security.
- Wanting connection.
- Worrying about the person; or perhaps just wanting to know where the person is.
How you respond will depend on the underlying need, so it is important that you take the time to work out why they are seeking that person.
Should I lie or tell the truth?
Telling the truth
Whilst telling the truth can seem like the best option as the phrase goes, honesty is the best policy, it can be very distressing for the person living with dementia to be told that their loved one has passed away. Telling them that their loved one has passed, is a form of reality orientation which is often used in the early stages of dementia when the person has some understanding of their memory difficulties. It should be carefully used in the later stages as the person may not be able to understand or retain the information. After time has passed, he/she may ask the question again, which can become distressing for family and carers. It is often confusing and distressing for the person to be told that a loved one has passed as this is not their reality. This type of communication could also lead to arguing with the person with dementia which is often unhelpful.
As mentioned above, this type of communication is generally used in the early stages of dementia. Traditionally it is used to help orient a person to where they are, who the people are around them and the time. This helps to alleviate confusion. Some examples include –
- Using a calendar or a calendar clock so the person knows the day, month, year, and time.
- Using a whiteboard to communicate important information such as appointments.
- Wearing name badges so people know who is helping them.
Lying is also not considered to be the most appropriate response either. There are some instances where what is referred to as Therapeutic lying is used. So, what is therapeutic lying? At its simplest, it is telling the person a lie to help calm them down, distract them and de-escalate the situation. For example, you might say “Bob is on holiday” or “Bob is at work, he will be home soon”. Whilst this might help in the short term, it is not helpful long term. People with dementia can still pick up on emotions and may sense that this is not the truth. Or the person could then ask to call their loved one, meaning that now you have to respond to another question and potentially tell another lie.
What is the best way to respond?
You may have heard the term Validation; this method acknowledges the underlying emotion or need and accepts the reality of the person with dementia. It is useful when your loved one has severe short-term memory problems and is unable to use thinking skills to understand what is happening and are not able to make sense of the present.
Validation involves accepting the person’s reality, empathising with them, and not arguing. It focuses on emotions and beliefs rather than whether what he/she is saying is true. You might ask the person questions, provide reassurance, and then distract with an activity, if appropriate.
Now we will look at some scenarios and how you might respond.
"Where is my Mum?"
If the person isn’t distressed, you might say, “You’re looking for your Mum. Tell me about your Mum, is she a good cook?”. In this way you are talking about the person’s Mum and asking them to reflect on their memories, rather than confronting them with the fact that their Mum has passed away. If you continue talking, you might find out that they are seeking Mum because they are hungry – this is the unmet need, feeling hungry – so now you can address that. Sharing memories also help the person to feel connected to the loved one he/she is missing.
"Where is Joan?"
Now, you might know Joan is deceased and perhaps the person is missing their wife. So, you might need to ask a few more questions to work out whether she is worried about him or just wants to know where he is. Use reflection and maybe say “Yeah, you really miss her, tell me, how long were you married?” Again, careful questions and reflecting on what the person is saying to you will help you work out what it is they are wanting. Depending on whether the person wants something from their loved one or is expecting them to do something will influence how you respond.
Sometimes, people with dementia can have a moment of clarity and might ask “Is my husband dead?” Instead of jumping right in and saying yes, try this “What do you remember about the last time you saw your husband/wife?” The person may reflect and give details about their last memories of their spouse. If the person can recall details, then share in the grief that they are feeling in that moment, offer physical comfort and reassurance.
If you would like to learn more about validation, Naomi Feil, who is credited with developing the approach has many videos including this one.
Tips for using Validation
There are many benefits for using validation including:
- Building trust
- Developing empathy for the person
- Promoting feelings of security
- Reducing conflict and stress
- Maintaining their dignity and self-esteem
When using the technique try to do the following:
- Don’t argue with them, their experience of reality is different from yours
- Try to step into their shoes and imagine what it must be like for them
- Rephrase what the person is saying to you, this helps them to feel that you have understood them.
- Match the person’s emotion
- Provide emotional support and reassurance e.g. you might say, “I would miss my Mum too”
- Try to redirect their attention to something more pleasant. Use reminiscence or change the topic or the activity.
There is no one-size-fits-all, you know your loved one better than others so will have a good idea of their needs and how to approach them.
We hope the information in this blog has helped you to understand some unmet needs such as why your loved one might be seeking a deceased family member and how best to respond. You may need to try different strategies, and that is okay. What works one day may not work so well another day, and that is okay too. If you would like help in supporting your loved one with dementia, please contact us to discuss your needs.