How to Promote Agency for People with Dementia

Agency refers to a person’s sense of control over their own life—being able to make decisions and choices about their day-to-day activities and wider life matters. For people with dementia, agency takes on special significance. Living with dementia can often mean that a person’s ability to make independent decisions is reduced. This does not mean that people with dementia should lose their voice or right to choose. Instead, supporting agency means upholding individuals’ rights to have as much say as possible over their lives.

When supporting people with dementia, the focus must be on what they can do and supporting their strengths. This respects their dignity and allows them to maintain their identity as the disease progresses. Promoting agency for dementia means giving practical and emotional support to encourage as much self-determination as possible.

Dementia and Decision-Making

Dementia is a set of symptoms that affect memory, reasoning, language, and behaviour. It is caused by conditions affecting the brain, such as Alzheimer’s disease. These changes can make everyday decisions much harder, like choosing what to wear or eat. Over time, more complex decisions—like money management or consenting to medical treatment—can also become more difficult.

Despite these challenges, people with dementia maintain feelings, preferences, and wishes. Supporting agency means finding ways for them to express their opinions and be heard, even as dementia progresses.

Staff and carers must listen carefully to what people communicate, both in words and behaviour. Small signs may show what matters to a person, which helps keep their choices at the centre.

What is Agency in Dementia Care?

Maintaining or supporting agency is a cornerstone of person-centred care. This approach moves away from simply ‘doing for’ the person, instead focusing on ‘doing with’ them. Agency supports:

• Dignity and respect
• A sense of purpose and meaning
• Better mental wellbeing
• Reduced frustration or aggression
• Greater satisfaction with care

When people feel in control, they are less likely to experience depression or anxiety. Feeling powerless can lead to distress, so every effort should be made to encourage involvement and decision-making.

Encouraging Everyday Choices

Most people take hundreds of daily decisions for granted. For someone with dementia, making even simple choices can boost their confidence and independence. Here are a few ways this can be encouraged:

• Offering options at mealtimes, such as “Would you like tea or coffee?”
• Asking about preferred clothes, keeping options simple
• Involving the person in planning activities
• Providing visual aids or prompts to make tasks easier

If a person struggles with open-ended questions, it’s better to offer two or three choices rather than asking a vague question. For instance, “Do you want to go for a walk in the garden or sit in the lounge?”, rather than “What do you want to do?”

Supported Decision-Making

Supported decision-making means helping a person to make choices without taking over entirely. This protects agency, even when dementia affects communication or understanding.

Carers and support workers can help by:

• Explaining information clearly, using simple language
• Breaking decisions into smaller steps
• Using pictures, objects, or gestures as prompts
• Allowing enough time for responses
• Checking back to see if the person is comfortable with a choice
• Not rushing, even if the process takes longer

If a person struggles to make a specific decision, it can help to ask if they want someone else to help decide, such as a family member.

The Mental Capacity Act 2005

In England and Wales, the Mental Capacity Act 2005 is a key piece of legislation. It protects people who cannot make some decisions for themselves. The law says every adult has the right to make decisions unless it is proven that they cannot. This must never be judged simply on diagnosis.

The Mental Capacity Act lays out five principles:

• Assume capacity unless proven otherwise
• Provide all possible help so the person can decide
• Do not treat someone as unable simply because they make what appears to be an unwise decision
• Any decision made for someone lacking capacity must be in their best interest
• Choose the least restrictive option

Agency is supported by these principles. Decisions for someone with dementia should always involve them as much as possible.

The Role of Professional Carers and Support Workers

Care workers play a vital part in supporting agency for dementia. This means not only meeting the person’s needs but supporting their rights to choose and influence their care. Staff need to:

• Listen actively and respectfully
• Use the person’s preferred way of communicating
• Take time to build trust
• Avoid making assumptions about what a person wants
• Work with family and friends when appropriate
• Reflect on their own practice and biases

Regular training helps staff to stay confident and up to date in these approaches.

Family, Friends, and Community

Close family and friends have a deep understanding of the person’s wishes and personality. Their involvement keeps care familiar and consistent, even when dementia progresses.

Families and carers can provide:

• Support with expressing choices
• Information about past preferences or routines
• Advocacy when the person cannot easily communicate

Community connections are also helpful. Familiar places, faces, and activities can support agency by providing a sense of belonging and routine.

Creating a Supportive Environment

The physical environment makes a real difference to a person’s ability to make choices and retain agency. Key features of a supportive setting include:

• Clear, simple signage
• Consistent lighting
• Familiar objects and photos
• Quiet areas to reduce stress
• Safe spaces for walking or activity

Accessible, reassuring spaces help people with dementia move around, choose activities, and feel in control.

Communication Techniques

Communication remains at the heart of supporting agency. Some helpful approaches include:

• Use of names and eye contact
• Speaking slowly and clearly, without shouting
• Checking understanding by repeating or rephrasing
• Non-verbal communication, such as gestures and facial expressions
• Not correcting or confronting, unless necessary for safety

Patience is crucial. A relaxed approach gives the person space to process and respond, which supports agency even when communication is difficult.

Advance Care Planning and Agency

Advance care planning means talking with people about their wishes for the future, including medical care, living arrangements, and end-of-life preferences. For people in the early stages of dementia, this is a chance to state their wishes clearly, even if they may not be able to later on.

Points to consider include:

• Where to live if needs change
• Preferences around medical treatment
• Who the person trusts to make decisions if needed (through powers of attorney)

Advance planning encourages agency by letting people express their choices and values in advance.

Overcoming Barriers to Agency

Many factors can make it harder for people with dementia to have agency:

• Communication difficulties
• Others assuming they cannot decide
• Lack of time or resources for carers
• Fear of making ‘wrong’ choices
• Stigma about dementia

Tackling these barriers involves training, awareness, and practical support. Everyone—care workers, families, communities—can play a role in addressing these challenges.

Bulleted Summary of Good Practice

Some practical ways to encourage agency in dementia care are:

• Offer simple, real options for choices throughout the day
• Allow extra time for responses and decision-making
• Use objects, pictures, and gestures if helpful
• Involve families and familiar staff as much as possible
• Keep to consistent routines where possible, but allow flexibility for choice
• Avoid making decisions for the person if they can contribute
• Reflect regularly with colleagues on practice and attitudes

Agency Case Study Example

Eileen lives with moderate dementia in a residential home. Staff noticed she often became upset at meal times. Rather than assuming Eileen could not decide, they started offering two meal options and showed pictures of each dish. Eileen now points to her choice and eats more happily. When asked what she’d like to do in the afternoons, Eileen sometimes asks for her favourite music. This small choice has made life calmer and more joyful for her. Her family say she seems more like herself, and other residents now choose activities in the same way.

Training and Support for Staff

Maintaining agency is a shared value in dementia care, but it takes knowledge and skill. Ongoing training helps staff:

• Recognise the signs of retained capacity to decide
• Use person-centred communication
• Understand the impact of environment on decision-making
• Manage risk in a way that keeps choices open
• Support families to uphold the person’s choices

Reading up-to-date best practice, talking with experienced colleagues, and reflecting on challenging situations all support better engagement with agency.

Risk, Safety, and Agency

Sometimes, supporting agency means balancing choice with safety. People with dementia may make decisions others disagree with, or that come with risks. Under the Mental Capacity Act, an unwise decision does not mean the person should lose the right to decide. The focus must be on supporting choice, keeping any restrictions to a minimum. Staff can manage risk by:

• Removing obvious hazards
• Explaining risks clearly in a way the person understands
• Working with family and health professionals
• Documenting discussions and actions in care records

This keeps the person’s rights at the centre of care, even when tough decisions are needed.

Technology and Agency

New technologies help support agency in dementia. Devices such as talking clocks, tablets with simple interfaces, or personalised music playlists can support independence. Some people use electronic reminders for medication or video calls to keep in touch with family. Care must be taken to pick devices that match the person’s abilities and needs.

Technology can:

• Help with communication
• Remind about appointments or tasks
• Give safe options for social contact

Proper support and setup are needed to get the best from these resources.

Peer Support and Social Networks

People with dementia often value support from others in similar situations. Peer groups give the chance to share experiences and opinions. Some groups are led by people living with dementia themselves, which encourages a strong sense of agency and belonging. Social networks in the community keep people included and valued, reducing isolation.

Final Thoughts

Agency is about respecting people’s rights, supporting independence, and encouraging a positive sense of self. For those living with dementia, agency reduces distress and strengthens wellbeing. It relies on supportive environments, skilled care, and a willingness to listen.

Promoting agency does not mean ignoring risks or difficulties. It means recognising that each person is an individual with their own wishes, feelings, and capacity to choose. With the right support, people with dementia can continue to shape their lives.