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Communicating with a family member diagnosed with dementia

Caregiving for a person with dementia can be very demanding at times. To provide some help and guidance, listed here are some instructions on how to make communication with an individual with dementia more efficient and less stressful. Instructions are grouped in clusters based on the issue being addressed and can be applied across a range of different real-life situations.

General communication strategies

  • Avoid complex remarks, questions, and demands
  • Speak in reassuring tone, stay calm
  • Keep instructions short so they are easier to understand
  • Use prompts/answer questions for individuals, if needed
  • When repeating, it is best to repeat the message in the same way, otherwise individuals with dementia will get confused
  • Ask questions framed in a way that is easier to answer.
  • When talking, sit beside the person with dementia, rather than stand above them
  • Give choice between two options, when possible
  • Use one idea sentences (sentences that have 1 verb at a time)
  • Use yes/no questions, when possible
  • Avoid distractions

Dementia impairs memory. Individuals with dementia can easily forget some facts about their life, their recent behaviours and things they agreed to do (such as attending doctor appointments). Be respectful and understanding.

Do:

  • Use prompts
  • Assist in coming up with an answer to a question if it is forgotten
  • Avoid direct answers to questions if answers can be upsetting to an individual (such as death of a family member)
  • Use distractions when the person with dementia is asking something that might really upset them
  • Check for things that are usually forgotten.
  • Leave notes as reminders

Don’t:

  • Challenge memory of an individual with dementia
  • Put emphasis on their memory deterioration
  • Let the confusion linger for too long
  • Take it personal if the person forgets your name or who you are
  • Tell the bold truth upfront if it can be upsetting – distract and redirect to another topic

A person with dementia will often refuse and resist to perform everyday activities. This is because dementia affects logic and reasoning abilities. It is important to understand that individuals with dementia still want and need to control aspects of their life.

Do:

  • Try to find and address the reasons for resistance
  • Refer to long-term memory of an individual and remind about the positive experiences related to an activity
  • Make an individual feel engaged in the process and provide guidance
  • Allow extra time for task completion
  • Be organized and prepared, but also ready to retry an activity at other times
  • Use an authority figure as a motivation (such as a doctor’s recommendation to take the pills)  
  • If resisting taking medications, make sure individual takes the most important pill first
  • Give options and try to make fulfilling routing task appealing and fun
  • Be flexible and think of alternatives if the target behaviour is difficult to acquire
  • Break the process in the smaller steps and make it clear what is happening

Don’t:

  • Force or rush an individual into anything
  • Make an individual feel out of control
  • Be aggressive, show your irritation, or be confrontational

Apathy is the most common symptom of dementia. An individual can feel bored, be in pain, or feel like he/she is not useful in any way. Witnessing apathy can be upsetting, particularly when the person was once highly engaged and active.

Do:

  • Focus on action, help a person to start with an activity
  • Encourage making plans ahead of time so that an individual has something to look forward to
  • Engage an individual in chores
  • Have a plan and develop a schedule for activities
  • Simplify activities, if possible
  • Try to engage an individual in simple and repetitive activities that can be comforting such as reminiscing, singing songs, or just sitting together

Don’t:

  • Let the apathy and depression linger for too long
  • Criticize an individual for being lazy
  • Force a person into anything
  • Be too demanding or confrontational
  • Set high expectations

Dementia impairs judgement of an individual and it is not always obvious to him/her that behaviour is seen as inappropriate to others.

Do:

  • Try to acknowledge an inappropriate comment and try to change the topic
  • Redirect attention to something else
  • Leave the place together with an individual, if needed

Don’t:

  • Shush an individual – it will likely stimulate resistance response and prolong the awkwardness
  • Do not try to make your loved one feel guilty for embarrassment in public
  • Do not limit your mom’s right for social interactions, just make sure to keep an eye on it

Dementia affects the part of the brain that provides impulse control. At the same time, dementia can impair an ability to see the problem at hand and to empathize with others. Individuals can struggle to see another person’s point of view. This might cause difficulties in communication.

People can become aggressive for different reasons. This can be because of pain, fear, or anger. Individuals with dementia might not understand what you need from them or might not recognize you and that can lead to frustration.

Do:           

  • Refer to context if relevant
  • Identify yourself if needed – a person might not recognize you and that can lead to frustration
  • Try to find the cause of aggression – pain, anxiety, fear
  • Make your intentions clear
  • Try to compromise
  • Try to connect through eye contact or gentle touch
  • Be ready to leave the situation if needed

Don’t:

  • Force any behaviours
  • Be aggressive in response
  • Take it personal

 

Repetitive behaviours can happen for numerous reasons. An individual might be bored, restless, anxious or simply can forget what he/she has been doing seconds ago. It is common in individuals with dementia, since some parts of the brain associated with memory can be damaged. It might cause anxiety and confusion.

Do:

  • Think about the reasons of behaviour (pain, boredom, restlessness) and address them
  • Ignore repetitive behaviour if it is not harmful to the individual or to his/her surroundings
  • For repetitive questions, try to answer as though it is the first time to save dignity of the individual
  • Leave notes as reminders – repetitive questions are caused by forgetfulness
  • Reassurance and re-direction can help to calm down

Don’t:

  • Use complex answers to repetitive questions to avoid long unproductive conversations

 

Poor judgement is a common symptom of dementia. Making simple choices may become very difficult and frustrating. Delusions, which are fixed and false ideas, are also a result of poor judgement.

Do:

  • Provide support in situations like these, and offer your help with judgement, whenever possible
  • Be ready to make decisions for your loved one
  • Refer to previous experiences of an individual
  • Ensure safety of an individual

Don’t:

  • Lessen concerns of an individual, however small they can be – take it seriously
  • Order an individual what to do
  • Rush

Insomnia occurs in one-fourth to one-third of people with dementia. It can lead to a lot of distress. It is also dangerous since your loved one can wander away while everyone else is asleep. Don’t be indifferent.

Do:

  • Spend some time together, discuss the events of the day and plans for the next day
  • Try to figure out what may be the cause of sleep disturbance
  • Keep a regular sleep/wake schedule
  • Try to create sleep-friendly quiet environment and a bedtime routine

Don’t:

  • Encourage excessive napping during the day
  • Encourage consumption of excessive caffeine, alcohol, or nicotine by an individual
  • Be indifferent to the lack of daytime activities

Wandering occurs because of restlessness and disorientation that people with dementia can experience. Your loved one may not realize the dangers that underly such behaviour, but you can help to address their needs if they are not met.

Do:

  • Look for potential reason for wandering (hunger, boredom, inactivity)
  • Use objects in your house as reminders (favorite objects, pictures)
  • Involve in family activities to alleviate anxiety and urge to wander
  • Use a door sensor or a GPS tracking device to prevent wandering
  • Encourage an individual to wear an ID bracelet

Don’t:

  • Lock the person in the house unless there is no other less restrictive option to keep them safe
  • Leave the keys from the house unattended

Hiding, hoarding, stealing and losing things are common behaviours for individuals with dementia. The problem is that people often forget where they put their possessions, especially if they decide to hide them in an unusual place. Be mindful that this behaviour does not always carry a clear intention.

Do:

  • Keep important documents and belongings protected and out of reach
  • Look for underlying reasons (e.g., hiding food because of hunger)
  • Redirect attention to other activities
  • Learn the usual hiding places
  • Use a “hoarding box” that an individual can put their possessions into.

Don’t:

  • Accuse an individual in hiding or stealing

Dementia impairs self-awareness and social judgement about many things, including matters of hygiene and appearance.

Do:

  • Try to minimize embarrassment and anxiety
  • Remind individual of positive previous experiences if there’s resistance to an activity (e.g., bathing, getting dressed or using a hairbrush)
  • Engage an individual in activities and use simple instructions
  • Prepare in advance and make adjustments to your daily routine, if needed
  • Be ready to notice signs such as restlessness, fidgeting of worrying (indicators of the need to use the bathroom)
  • Provide verbal praise and physical guidance with some tasks

Don’t:

  • Impose limitations
  • Make an individual feel out of control

Older individuals can sometime have low appetite. It is important to maintain a healthy diet. Without nutritious food, your loved one may get sick easily and will be tired and confused during the day.

Do:

  • Consult with the doctor/dietitian
  • Vary the food – taste can change with time
  • Provide snacks
  • Engage individual in meal preparation
  • Try to sit down and eat at the same time
  • Try having a personal support worker be with your dad at mealtimes

Don’t:

  • Force certain kinds of food, or foods that can be hard on teeth

As many as 3 in 4 people with dementia may have some level of anxiety. Not always individuals with dementia can explain what exactly worries them. With the calm tone, try to understand what is wrong and try to address their needs.

Do:

  • Make sure the needs of an individual are met
  • Remove the object that causes anxiety
  • Create a calm and soothing environment
  • Listen to music preferred by an individual
  • Spend some time together

Don’t:

  • Rush
  • Try to escape the situation

Giving care to someone with dementia is very challenging work. One person simply cannot meet all the person’s needs. Share the load before you burn out.

Do:

  • Acknowledge individual’s wish for privacy if they don’t want anyone to know about their dementia
  • Turn to outside support like services in your community or your trusted friends to share about your struggles with caregiving
  • Take breaks and look after yourself
  • Ask for help, if you need to
  • Seek professional advice if you are concerned or if difficult feelings persist

Don’t:

  • Ignore your own needs and feelings
  • Neglect your own health
  • Say no to offers of help from others

A person with dementia may need some assistance to get ready to go out.

Do:

  • Start getting ready in advance
  • Take the responsibility to double-check if anything is forgotten
  • Check one item at a time to avoid confusion

Don’t:

  • Assume a person with dementia needs help with everything
  • Ask too many things from an individual all at once

There are many reasons you have to send an individual to a long-term care facility. It is difficult for both of you, and there will be times he/she will want to come back home. Provide reassurance that the person is not abandoned or neglected.

Do:

  • Pay visits and spend time together
  • Provide reassurance that you are ready to support an individual
  • Acknowledge feelings of an individual

Don’t:

  • Point out at inability of an individual to look after themselves

 

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