Leadership, Research, and Best Practice in Dementia Care.

 

Leading with Compassion: Research and Best Practice in Dementia Care

By Mary Lourdes Bonnici MBA

Introduction

Dementia care is one of the most important and complex areas of modern health and social care. It requires far more than clinical knowledge. It demands compassionate leadership, ethical decision-making, effective communication, continuous research and a genuine commitment to protecting human dignity.

Dementia is not a single disease. It is an umbrella term covering several conditions that affect memory, thinking, communication, behaviour and the ability to perform everyday activities. Alzheimer’s disease is the most common form, but other types include vascular dementia, dementia with Lewy bodies and frontotemporal dementia. Some people experience more than one type simultaneously, known as mixed dementia.

Although dementia occurs more frequently among older adults, it is not an inevitable or normal part of ageing. The World Health Organization explains that dementia has physical, psychological, social and economic consequences for individuals, families, carers and society.

Excellent dementia care must therefore address the whole person rather than concentrating exclusively on cognitive decline.

Understanding the Person Behind the Diagnosis

A diagnosis of dementia may change a person’s abilities, but it does not remove their identity, emotions, values or right to be respected.

Every person living with dementia has a unique life story. They have relationships, achievements, cultural traditions, preferences, fears and ambitions. Effective care begins by learning who that person is and recognising what remains meaningful to them.

Person-centred care places the individual at the centre of every decision. Instead of defining someone by their diagnosis, it considers their personality, history, strengths, preferences and present needs. According to the Alzheimer’s Society, this approach can help people maintain their confidence, self-esteem, skills and involvement in meaningful activities.

The essential question should not be, “What is wrong with this person?” It should be, “What is this person experiencing, and how can we support them?”

The Meaning of Leadership in Dementia Care

Leadership in dementia care is not limited to holding a senior position. Leadership is demonstrated through everyday decisions, professional behaviour and the standards established within a care environment.

A strong leader creates a culture in which dignity, safety, empathy and accountability are visible in practice. Such leaders listen carefully, encourage learning, support their teams and ensure that decisions are guided by evidence.

Compassionate leadership is particularly important because dementia care can be emotionally and physically demanding. Professionals and family carers may experience stress, grief, frustration and exhaustion. When these pressures are ignored, they may affect the quality and consistency of care.

Effective leaders recognise these pressures and develop supportive working environments. They encourage staff to discuss concerns, learn from incidents and seek assistance without fear of humiliation. They also understand that staff wellbeing and patient wellbeing are closely connected.

Leadership must ultimately translate organisational values into meaningful human experiences.

Evidence-Based Dementia Care

Evidence-based practice combines three important elements: the best available research, professional expertise and the individual’s values and preferences.

Research provides valuable guidance, but evidence must be applied thoughtfully. Two people with the same diagnosis may experience very different symptoms, abilities and emotional responses. A successful intervention for one person may be unsuitable for another.

Evidence-based dementia care may involve cognitive stimulation, support for daily living, physical activity, medication where clinically appropriate, environmental adaptation, nutrition, social engagement and assistance for carers. Care must be regularly reviewed because dementia develops differently in every individual.

The NICE guideline on dementia recommends personalised assessment, involvement in decision-making and coordinated support for people living with dementia and their carers. It also emphasises interventions that promote cognition, independence and wellbeing.

Evidence-based care does not replace compassion. It helps compassion become safer, more consistent and more effective.

Early Recognition and Accurate Assessment

Memory difficulties do not always indicate dementia. Similar symptoms may be associated with depression, medication effects, vitamin deficiencies, thyroid disorders, infections, sleep problems, sensory loss or other medical conditions.

Professional assessment is therefore essential. Diagnosis may include a detailed medical history, cognitive assessment, physical examination, blood tests, information from relatives and, where appropriate, brain imaging.

Early recognition may allow the person to understand their condition, access suitable treatment, plan for the future and express their preferences while they can still participate fully in important decisions. It may also allow families to obtain reliable information and prepare for changing support needs.

A diagnosis must be delivered sensitively. Information should be understandable, honest and paced according to the individual’s emotional readiness. The person should be given sufficient time to ask questions and should not be treated as though their future has already been decided for them.

Communication That Preserves Dignity

Communication is central to safe and compassionate dementia care. As dementia progresses, a person may require additional time to understand information, retrieve words or express a need.

Professionals and carers should use clear language, maintain appropriate eye contact and speak calmly. Too many questions or instructions at once may cause confusion. A quiet environment can make communication easier, especially when the person also experiences hearing or visual difficulties.

It is important to speak directly to the individual rather than discussing them as though they are absent. Even when verbal communication becomes difficult, tone of voice, posture, facial expression, touch and behaviour may communicate valuable information.

Repeated questions should not automatically be interpreted as deliberate or difficult behaviour. The person may be seeking reassurance because they cannot remember the previous answer. Responding with irritation can increase fear, while a calm response may restore a sense of safety.

Understanding Behaviour as Communication

Changes in behaviour can be among the most challenging aspects of dementia care. A person may become restless, withdrawn, distressed, suspicious, verbally aggressive or resistant to assistance.

These reactions should not immediately be labelled as “challenging behaviour.” Behaviour often communicates an unmet physical, emotional, social or environmental need.

The individual may be experiencing pain, hunger, thirst, constipation, infection, tiredness, loneliness, fear, sensory overload or an unfamiliar routine. They may not be able to explain the problem verbally.

Best practice requires professionals to investigate possible causes, observe patterns and consider the person’s perspective. Non-drug approaches should be considered wherever appropriate, including reassurance, meaningful activity, pain assessment, environmental adjustment and familiar routines.

Medication may sometimes be clinically necessary, but it should never replace a careful assessment of why the distress is occurring.

Creating a Dementia-Friendly Environment

The physical environment can either promote independence or increase confusion.

Good lighting, reduced noise and clear visual cues can help people understand their surroundings. Contrasting colours may make doors, chairs and bathroom facilities easier to identify. Clutter, strong patterns, reflections and poor lighting may create uncertainty or misinterpretation.

Familiar objects, photographs and personal belongings can provide comfort and reinforce identity. Access to safe outdoor spaces may support physical activity, relaxation and connection with nature.

Safety is essential, but it should not become excessive restriction. The objective is to balance protection with freedom, choice and independence.

A person should be supported to continue doing what they can, even if tasks require more time or gentle assistance. Completing every activity on someone’s behalf may appear efficient, but it can unintentionally reduce confidence and ability.

Meaningful Activity and Social Connection

Meaningful engagement is not an optional form of entertainment. It is part of good dementia care.

Suitable activities may include music, gardening, household tasks, art, reading, gentle exercise, reminiscence, religious practice or spending time with family. What matters is that the activity reflects the person’s interests, abilities and culture.

Activities should not be selected solely according to age. A person’s profession, hobbies and previous responsibilities may offer important clues about what will give them purpose.

Social connection can reduce loneliness and support emotional wellbeing. However, participation should never be forced. Some people enjoy groups, while others feel safer in quieter, individual activities.

The objective is not to keep someone constantly occupied. It is to create genuine opportunities for enjoyment, identity, belonging and achievement.

Nutrition, Hydration and Physical Wellbeing

People living with dementia may forget to eat or drink, lose interest in food or find it difficult to recognise items on a plate. They may also experience problems using cutlery, chewing or swallowing.

Support should be adapted sensitively. A calm setting, appealing food, familiar meals and appropriate assistance may improve the experience. Changes in appetite or swallowing should be assessed professionally because they may indicate an underlying health concern.

Physical health must never be overlooked. Pain, infection, constipation, poor sleep, dehydration and medication side effects can affect mood, cognition and behaviour.

Regular movement can support strength, balance, circulation and emotional wellbeing when suited to the person’s abilities and medical needs. Hearing, vision, dental care and foot health also contribute to independence and quality of life.

Supporting Families and Carers

Dementia affects entire families. Carers may experience love, fulfilment and closeness, but also exhaustion, sadness, uncertainty and anticipatory grief.

Families need accurate information, practical guidance and emotional support. They should be included in care planning with the person’s consent, while recognising that the individual living with dementia remains at the centre of the process.

Respite care, support groups, counselling and training can help carers continue their role safely. Asking for assistance should never be regarded as failure. Sustainable care requires realistic support.

Professionals should also recognise that relatives possess valuable knowledge about the person’s habits, communication, history and preferences. Respectful partnership between families and professionals can improve continuity and reduce distress.

Safeguarding, Rights and Ethical Practice

People living with dementia may be vulnerable to neglect, exploitation, discrimination and different forms of abuse. Safeguarding must therefore remain a central responsibility.

However, protection should not remove every opportunity for choice. A diagnosis of dementia does not automatically mean that someone cannot make decisions. Capacity may vary according to the decision, the circumstances and the support provided.

Information should be explained in an accessible way, and individuals should be given time to consider their choices. Where a person cannot make a particular decision, actions should follow relevant law, professional guidance and the person’s best interests, values and known wishes.

Ethical dementia care protects privacy, dignity, consent, autonomy and the least restrictive form of support.

Research and Dementia Risk Reduction

Research continues to improve our understanding of dementia prevention, diagnosis, treatment and care.

The 2024 Lancet Commission identified 14 potentially modifiable risk factors across the life course. These include limited education, hearing loss, high blood pressure, smoking, obesity, depression, physical inactivity, diabetes, excessive alcohol consumption, traumatic brain injury, air pollution, social isolation, high LDL cholesterol and untreated vision loss.

The Commission estimated that addressing these factors could potentially prevent or delay a substantial proportion of dementia cases at population level. However, risk reduction is not a guarantee, and people should never be blamed for developing dementia. Genetics, ageing, health inequalities and circumstances beyond personal control also influence risk.

Public-health action matters. Access to education, hearing and visual care, safe environments, social opportunities and appropriate management of cardiovascular risks can support healthier ageing across society. The complete report is available through The Lancet Commission’s 2024 publication.

Workforce Education and Continuous Improvement

Quality dementia care depends on a confident, knowledgeable and compassionate workforce.

Training should extend beyond basic awareness. Staff require practical understanding of communication, behaviour, pain recognition, safeguarding, consent, cultural sensitivity, end-of-life care and support for families.

Organisations should regularly review care quality, listen to people living with dementia and learn from complaints, incidents and positive outcomes. Research findings should be translated into realistic improvements rather than remaining confined to academic publications.

Continuous improvement does not mean expecting perfection. It means remaining willing to listen, reflect, learn and change.

Measuring What Truly Matters

The success of dementia care should not be judged only by clinical tasks or organisational efficiency.

Important outcomes include whether the person feels safe, respected and understood. Quality care should help individuals retain as much independence, connection and choice as possible. It should also support families and ensure that staff have the knowledge and resources required to provide dependable care.

Data can identify patterns and areas for improvement, but personal experiences provide information that statistics cannot capture. The voices of people living with dementia must influence service development, education and research.

Hope Within Dementia Care

There is currently no universal cure for dementia, but this does not mean that nothing can be done.

People living with dementia can continue to experience affection, humour, comfort, creativity and meaningful relationships. Good care can reduce avoidable distress, support remaining abilities and create moments of genuine wellbeing.

Hope in dementia care is not based on denying the difficulties of the condition. It is based on recognising that dignity, connection and quality of life remain possible at every stage.

Conclusion

Leadership, research and best practice must work together to improve dementia care.

Research provides evidence. Leadership turns that evidence into consistent standards. Compassion ensures that the person never disappears behind the diagnosis.

The strongest dementia-care cultures are built on dignity, communication, inclusion, safety and continuous learning. They recognise the contribution of families, support the workforce and listen directly to people living with dementia.

The true measure of excellence is not simply how effectively services manage a condition. It is how respectfully society supports the human being experiencing it.

Reflection Questions

What does person-centred dementia care mean to me?

How can I communicate more calmly and respectfully with someone experiencing memory or language difficulties?

Do I try to understand what a person’s behaviour may be communicating?

How can leaders create a more supportive environment for dementia-care professionals and family carers?

What practical change could I make to protect dignity, choice and independence?

How can research be translated into better everyday care?

Am I focusing only on what the person has lost, or am I also recognising their remaining strengths?

My Personal Reflections

What does person-centred dementia care mean to me?

To me, person-centred dementia care means recognising the individual before the condition. Every person has a unique identity, history, personality, culture and set of preferences. I believe care should protect dignity, respect personal choices and support the person’s remaining strengths rather than focusing only on what has been lost.

How can I communicate more calmly and respectfully with someone experiencing memory or language difficulties?

I can communicate more effectively by speaking clearly, using simple language and allowing sufficient time for the person to respond. I should maintain a calm tone, avoid correcting or rushing them unnecessarily and observe non-verbal communication. Above all, I must speak directly to the person and ensure they feel included, valued and respected.

Do I try to understand what a person’s behaviour may be communicating?

Yes. I understand that behaviour may express an unmet need that the person cannot communicate verbally. Distress, restlessness, withdrawal or resistance may result from pain, fear, hunger, tiredness, loneliness, confusion or an uncomfortable environment. I would therefore look beyond the behaviour and try to understand its possible cause with patience and compassion.

How can leaders create a more supportive environment for dementia-care professionals and family carers?

I believe leaders must listen, communicate openly and recognise the emotional and physical pressures associated with dementia care. They should provide appropriate training, practical resources, emotional support and opportunities for reflection. A supportive culture should allow professionals and carers to raise concerns, seek help and learn from experience without fear of blame.

What practical change could I make to protect dignity, choice and independence?

I can involve the person more actively in everyday decisions instead of automatically deciding on their behalf. Even simple choices about clothing, food, activities or daily routines can preserve autonomy and confidence. I would also encourage the person to complete tasks they can still manage, offering assistance only when necessary.

How can research be translated into better everyday care?

Research must be transformed into clear policies, relevant training and practical improvements. I would encourage professionals to remain informed about current evidence, discuss its implications and evaluate whether changes genuinely improve people’s experiences. Research becomes meaningful when it leads to safer, more compassionate and more personalised care.

Am I focusing only on what the person has lost, or am I also recognising their remaining strengths?

I believe it is essential to recognise what the person can still do. Dementia may affect memory and independence, but it does not remove a person’s emotions, identity, abilities or need for meaningful relationships. I would focus on their remaining strengths, encourage participation and celebrate achievements, however small they may appear. This approach can promote confidence, purpose and a better quality of life.

References

Alzheimer’s Society (n.d.) Person-centred care. Available at: Alzheimer’s Society.

Livingston, G. et al. (2024) ‘Dementia prevention, intervention, and care: 2024 report of the Lancet Standing Commission’, The Lancet, 404(10452), pp. 572–628. Available at: PubMed.

National Institute for Health and Care Excellence (2018) Dementia: assessment, management and support for people living with dementia and their carers, NG97. Available at: NICE.

World Health Organization (2026) Dementia. Available at: WHO.

Important Notice

This article is intended for education and awareness. It does not replace professional medical assessment, diagnosis or treatment. Anyone concerned about memory, cognition or behavioural changes should consult an appropriately qualified healthcare professional.

Copyright

© 2026 Mary Lourdes Bonnici MBA. All Rights Reserved.

This article is the intellectual property of Mary Lourdes Bonnici MBA. Unauthorised reproduction or distribution is prohibited.