Communication Difficulties in Dementia

  • Reference Number: HEY-751/2016
  • Departments: Speech and Language

Introduction

This leaflet has been produced to provide general information about your family member and some of the communication difficulties they may experience as a result of having dementia.  It is not intended to replace the discussion with the speech and language therapist, but may act as a starting point for discussion.  If after reading it you have any concerns or require further explanation, please discuss this with a member of the healthcare team.

Why might communication be difficult in dementia?

As the disease progresses changes may occur in the areas of the brain that are involved in controlling language and memory.

How could communication be affected?

The following may affect their ability to communicate:

  • Memory loss e.g. struggling to remember topics to discuss or events that have happened.
  • Difficulties understanding language.
  • Difficulties finding the words they want to say.
  • Hearing/sight impairment (common in elderly population).
  • Hallucinations (a figment of the imagination).
  • Distractibility e.g. difficulties keeping on topic and being distracted by the environment.

Emotions people with dementia may feel as a result of a communication breakdown:

  • Confusion
  • Frustration
  • Anger
  • Distress
  • Insecurity
  • Fear

It is also important to note that some people may experience a changed sense of the ‘passage of time’. For example, an old buried memory may resurface and feel like it happened only yesterday, this means some painful memories may feel heightened.

Behaviours that may occur as a result

  • Withdrawal from social interaction/ conversations and reluctance to engage.
  • Aggression towards others or self.
  • Fear and disorientation.
  • Some people may lack insight into their memory difficulties and this may place more challenges onto their conversation partner.

Advice on how you can help

Things to Check First

  • Communication is often easier if the environment is calm, simple, safe, and quiet. For instance, if you are trying to talk to your loved one and the television is on, the dishwasher is running and grandchildren are running through the house, your loved one might be distracted or agitated by all of the activity and noise. Try keeping things more peaceful and simple.
  • Let the person know that they have your full attention.  Stop any other activities and focus just on that interaction.
  • Try not to have too many people visit your loved one at once.
  • Make sure the person’s glasses are clean, hearing aids are working and dentures are clean and fit comfortably.
  • If they use alternative communication aids e.g. picture boards, ensure these are to hand.

Managing Emotional Distress

  • If the person with dementia is experiencing emotional distress it may be due to many things. One of the causes could be a communication breakdown or even old memories resurfacing. Therefore, it is important to acknowledge that the person’s thoughts will be just as real for them as our thoughts are to us.
  • Keep a soothing tone of voice and offer comfort as appropriate.
  • It is important to build up an awareness of an individual’s way of communicating e.g. when a person with dementia asks for a relative that has passed away, this might indicate loneliness, therefore it is important that we focus on what feelings this statement represents rather than the inaccurate content e.g. do not correct their mistakes.

Using Listening Skills

  • Make sure you are face-to-face.
  • Accept non-verbal forms of communication (i.e. pointing).
  • Be aware of signs that might suggest the person has not understood you – e.g. looks confused.
  • If communication breaks down, reassure them that you value what they have to say and you do want to understand.
  • Let them express their feelings even if they are negative; do not ignore the message they are giving.
  • Allow longer for the person to respond and do not interrupt what they are saying, they may need longer to express themselves.

Supporting Conversations

  • Make sure that the order of your comments follow the actual time sequence e.g. “I went to the shop, and then I met Margaret”.
  • Keep your message short and simple e.g. try and start with the main topic then add the details later.
  • Use natural gestures to supplement what you are saying.
  • Refer to objects or pictures that you have nearby to aid conversation. For instance, if you are talking about a story you read in the newspaper, show the person the part of the paper you are talking about.  If you are talking about a family member, find a photograph of the person.
  • Emphasise key words.
  • Re-phrase information if the person indicates that they have not understood you.
  • Simplify your questions as necessary to avoid frustration.
  • As dementia progresses, the person may become less able to initiate conversation; you may have to start taking this initiative.

Supporting Memory

  • Use a diary/calendar to record events.
  • Look at old photos of friends and family and talk about them.
  • Keeping a consistent schedule or daily routine will help keep your relative more relaxed; routine can be calming and soothing.
  • It can also be helpful to add memory cues around the home/bed space, such as pictures of key family members and friends with their phone numbers.
  • You can also add picture labels on drawers or cupboards to identify where different items are kept.
  • Reducing clutter and reducing noise.
  • Keep everyday items, such as dentures/glasses, in the same place and try to do things in the same order each time.
  • Use an alarm to help your loved one remember to do something in the future, such as taking something out of the oven.
  •  Encourage them to repeat back to someone important information you need to remember.

Show Respect

Most importantly, when communicating with someone who has dementia, try to include them, try not to patronise and do not talk about them as if they are not there. To enhance your interaction, ensure that you respect their feelings and help them maintain their own identity.

Butterfly Scheme

The Butterfly Scheme at Hull and East Yorkshire Hospitals is used to easily identify people with dementia, in order to support them in the best possible way.

  • With the patient’s consent, or if deemed in their best interest (if they are unable to consent), a symbol of a butterfly is placed above the patient’s bed so that staff can offer specific support.
  • A carer sheet is placed at the end of the bed and with the family’s support, personal information is collected so that the specific needs of the patient are identified and met. This information also helps the staff to have meaningful conversations with the person who has dementia.
  • The Butterfly Scheme provides all staff with training to enhance their skills in helping people who have dementia.

Contact Details

Other information may be found at:

General Advice and Consent

Most of your questions should have been answered by this leaflet, but remember that this is only a starting point for discussion with the healthcare team.

Consent to treatment

Before any doctor, nurse or therapist examines or treats you, they must seek your consent or permission. In order to make a decision, you need to have information from health professionals about the treatment or investigation which is being offered to you. You should always ask them more questions if you do not understand or if you want more information.

The information you receive should be about your condition, the alternatives available to you, and whether it carries risks as well as the benefits. What is important is that your consent is genuine or valid. That means:

  • you must be able to give your consent
  • you must be given enough information to enable you to make a decision
  • you must be acting under your own free will and not under the strong influence of another person

Information about you

We collect and use your information to provide you with care and treatment. As part of your care, information about you will be shared between members of a healthcare team, some of whom you may not meet. Your information may also be used to help train staff, to check the quality of our care, to manage and plan the health service, and to help with research. Wherever possible we use anonymous data.

We may pass on relevant information to other health organisations that provide you with care. All information is treated as strictly confidential and is not given to anyone who does not need it. If you have any concerns please ask your doctor, or the person caring for you.

Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about you. For further information visit the following page: Confidential Information about You.

If you or your carer needs information about your health and wellbeing and about your care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.