A Carer’s Guide to Supporting Individuals with Dementia and Challenging Behaviour
As a carer for individuals with dementia, you are on the front line of providing compassionate support in complex situations. This guide will refresh and sharpen your skills in managing challenging behaviour, reinforcing the core principles of care: to provide effective support that maintains quality of life, promotes independence, and treats every individual with the dignity and respect they deserve.
Understanding Dementia
Dementia is a term used to cover a wide range of conditions that cause an individual to experience similar symptoms. While each person’s experience is unique, there are common challenges that can arise.
Common symptoms experienced by individuals with dementia include problems with:
- Memory: Problems recalling recent events or conversations.
- Thinking and reasoning skills: Finding it more difficult to follow conversations or read information.
- Communication skills: Experiencing difficulties processing information and engaging in verbal communication.
- Orientation: Losing track of the day or date, or becoming confused about where they are.
- Visuospatial skills: Issues judging distances and seeing objects in three dimensions.
Individuals may also experience changes in their mood, becoming frustrated, irritable, anxious, or unusually sad. In some types of dementia, a person may see things that are not there (visual hallucinations) or believe things that are not true (delusions).
When these cognitive and emotional changes become a person’s daily reality, it can create a profound sense of being lost. To better understand this, imagine going for a walk in the woods, losing track of time, and not being able to find your way back. The feelings that might arise—anxiety, fear, and anger—are often the same emotions that a person with dementia is trying to navigate as they make sense of their reality.
The Critical Role of Nutrition and Hydration
Malnutrition can be a serious issue for older people, and it poses a significant risk for those with dementia. There are several reasons why an older person may eat less.
- Difficulty swallowing (e.g., for individuals with Parkinson’s disease).
- Difficulties with chewing (e.g., people with poor-fitting dentures or weakened teeth).
- Difficulties with feeding themselves (e.g., the chronically ill, people with advanced stages of dementia, chronic pain sufferers, or people with reduced energy).
A balanced diet and adequate hydration are essential. The Food Standards Agency recommends that individuals drink between 6 and 8 glasses of fluid a day. This should always be encouraged as long as it does not contradict an individual’s specific care plan.
Here are some actionable tips for supporting individuals with nutrition and hydration:
- Find out about individuals’ food likes and dislikes.
- Think about the presentation of food, especially if it is a puree diet.
- Ensure that food and drink can be reached.
- Think about aids like non-slip mats or shaped cutlery.
- Consider their dentures: are they in and do they fit comfortably?
- Remember that some medications can cause side effects like constipation or diarrhoea, which may in turn affect appetite.
- Give encouragement without badgering or forcing the person to eat.
- Ensure that food is provided at the correct temperature.
Decoding Challenging Behaviour
Individuals with dementia may sometimes behave in ways that are difficult for carers to understand. This behaviour can be challenging, but it is crucial to see it as a form of communication.
The formal definition of Challenging Behaviour is:
“Behaviour of such an intensity, frequency or duration that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour which is likely to seriously limit or delay access to, and use of, ordinary community facilities.”
—Emerson et al (1987)
Challenging behaviour can include:
- Aggression/violence
- Self-harm
- Destructiveness
- Withdrawal
- Disruptiveness
In addition to these general categories, carers will recognise highly specific behaviours common in individuals with dementia, such as purposeful walking (e.g., looking for something or someone familiar) or experiencing disorientation and confusion between day and night.
It is essential to remember that challenging behaviour is most often used as a form of communication. When a person feels threatened, scared, or vulnerable, their actions may be an attempt to express an unmet need. Your role is to translate this behaviour to understand and address the underlying issue.
A 3-Step Approach to Managing Violent or Aggressive Situations
If you encounter a violent or aggressive situation, it is vital to recognise that an agitated person needs help. Your immediate priorities should be to:
- Always remain calm.
- Try to identify the factors causing the violence or upset.
- Consider if they are trying to communicate unmet needs.
- Never ignore dissatisfied, agitated, or annoyed service users.
The Public Health Model provides a strategic framework for intervention in these situations.
a. Prevention
Prevention is the most effective strategy. It includes conducting risk assessments, assessing a service user’s history and care plans, maintaining good relationships, respecting cultural or religious beliefs and traditions, and creating a calm and safe care environment.
b. De-escalation
The goal of de-escalation is to form an empathetic alliance with the individual through early intervention and effective communication. The aim is to calmly relate to the person and manage the situation before it escalates.
If de-escalation does not work and the individual exhibits danger signs, the protocol is clear: LEAVE and GET HELP.
c. Physical Restraint
Physical restraint is to be used only as a LAST RESORT and only by fully trained staff members.
The Mental Capacity Act (MCA): Protecting and Empowering
The Mental Capacity Act (MCA) is a legal framework designed to protect and empower individuals aged 16 and over who may lack the mental capacity to make their own decisions. For carers, the MCA is not just a legal document; it is a daily guide for empowering individuals and ensuring that every decision, big or small, is made with their rights and best interests at the forefront.
Examples of people who may lack capacity include those with:
- Dementia
- A severe learning disability
- A brain injury
- A mental health illness
However, having one of these conditions does not automatically mean a person lacks the capacity to make a specific decision. Someone may lack the capacity to handle complex financial issues but retain the capacity to decide what to buy at a local shop.
The MCA is built on Five Statutory Principles that all healthcare professionals must follow:
- Assume a person has capacity unless it is proven otherwise.
- Wherever possible, help people to make their own decisions.
- Do not treat someone as lacking capacity just because they make an unwise decision.
- If you make a decision for someone without capacity, it must be in their best interest.
- Treatment and care provided should be the least restrictive of their basic rights and freedoms.
Putting the Person First: Person-Centred Care and PBS
Person-centred care means building a personal profile of the service user and empowering them by involving them in decisions about their own care. To provide this type of support, a carer should understand various aspects of the user’s life:
- Past career and employment
- Pastimes, hobbies, special interests
- Family history and background
- Medical history
- Religious/cultural beliefs
- Personal preferences regarding food/drink
This person-centred philosophy is put into practice through a framework known as Positive Behaviour Support (PBS). Skills for Care defines PBS as “a person-centred approach to supporting people who display, or are at risk of displaying, behaviours which challenge.” It is a framework for understanding behaviour by looking at an individual’s life history, physical health, and emotional needs.
The key components of PBS are:
- A functional assessment to understand the meaning behind the person’s behaviour.
- Creating and adjusting supportive environments to meet their needs.
- Teaching new skills to the individual to help them communicate their needs more effectively.
Practical Communication Strategies
Good communication helps service users feel at ease, in control, and valued. A key aspect of effective communication is respect. Information can be exchanged through several methods: verbal (words and tone), non-verbal (body language), and behavioural (actions or inactions).
General techniques for effective communication include:
- Smiling
- Getting down to eye level
- Asking relevant questions and listening to the answers
- Having patience and not rushing
- Using appropriate language and speaking clearly
- Gaining the person’s attention before speaking
Communicating with Individuals Who Have Dementia
When communicating with individuals with dementia, some specific strategies can be particularly helpful:
- Try not to question them directly.
- Ensure they are given time to communicate what they feel or need.
- Use simple, short sentences that do not provide too much information at once.
- Be aware that they may respond to your body language and tone of voice.
- Explore ways to validate their point of view to increase their wellbeing.
- Recall that knowing their life history (e.g., where they lived or worked) can be a helpful tool for connection.
Conclusion
Ultimately, your ability to combine empathy with these proven strategies is what transforms challenging situations into moments of connection and support. By embracing a person-centred approach, decoding behaviour as communication, and respecting the legal frameworks that protect individuals, you do more than just manage a condition—you honor the person.