In this topic, the importance of developing a person-centred care plan for persons living with dementia is emphasised. This page also summarises some of the best practices for a person-centred care planning process and the elements that a good care plan entails. Having these in place will assist care professionals to then deliver quality person-centred care for their clients or patients living with dementia.
What Is a Care Plan and Why Is It Important?
A care plan is usually a/an:
- Extension of a medical and health record;
- Written record (either electronic or paper-based) of the outcomes of a care planning process, where care professionals and recipients discuss and agree on an action plan to achieve a set of care goals that are of most concern to the needs and conditions of care recipients; and
- Living document that is used, reviewed and updated routinely (ranging from once daily to every few months) by the care recipients, care professionals and/or others (i.e., care recipients’ families).1,2
Care plans and care planning are essential as they serve the following purposes:
- Individualised/ Personalised Care: They provide overall directions and detail the approaches that care professionals should use or personalise to the unique, individual needs, diagnosis and conditions of a care recipient;
- Facilitate Continuity and Coordination of Care: They are means of communication on care information and delivery to facilitate continuity of care between different care professionals, across shifts, or even between two care settings. This helps to ensure that the care recipient continues to receive the same care regardless of the changes. Sometimes, the care interventions may also need to be carried out by two or more professionals and settings; and
- Encourage Documentation of Care: Care plans function as documentation which outlines care recipients’ needs, conditions, and interventions. This documentation functions as a helpful guide to a multidisciplinary care team, when the client/patient may require attention from team members with specialised skills at different points of time.2,3
A ‘gold standard’ care planning process should lead to the creation of a care plan, which in turn serves as a foundation and guide that feeds back into ongoing care planning and implementation.1 Care plans are used in many healthcare systems all over the world, and each country may have its own set of requirements for the development of care plans.1
Care plans for different mental conditions may look different, since the steps taken to address different conditions focus on different issues and strategies to address them. For example, care plans for individuals who suffer from chronic asthma are focused on daily management and step-up treatments in case of emergency situations and/or deterioration, where urgent medical interventions are needed.4 On the other hand, care plans for severe mental health conditions consist of both needs assessments and action plans, which focus more on the management of crisis situations should they occur.5
Care Plans in Singapore
In Singapore, the Ministry of Health (MOH) has developed service requirements and standards for centre-based services and nursing homes to follow when creating their respective care plans for clients and residents, including those living with dementia. These documents state that:
- Upon admission, preliminary assessments and care plans should be administered and developed, respectively;
- Clients’/residents’ assessments, care needs, goals of care, interventions, outcomes, and evaluation of care should be documented;
- Ongoing comprehensive assessments are necessary; and
- Care plans should be routinely evaluated and reviewed.
Refer to the Ministry of Health’s websites for the latest information on the requirements for care planning in Intermediate and Long-Term Care Services (i.e., Centre-Based Care Services, Home Care Services, Nursing Homes, etc.):
Person-Centred Care Planning for Persons Living With Dementia
As dementia is progressive, a person living with dementia will experience a worsening of symptoms, as well as a deterioration of their abilities over time. However, the most disabling effect of dementia is not the cognitive and functional impairments, but the implications on one’s self and personhood.6 With continual cognitive and functional decline, it becomes increasingly difficult for a person living with dementia to communicate about their needs and preferences. Thus, it may be easier for others to take control over their life and care. As a result, they may often be perceived as diminished beings, and be treated in non-humane ways, and as though they are no longer human beings.7
Professor Thomas Kitwood, the author of “Dementia Reconsidered: The Person Comes First”, advocated for the position that personhood consists of more than a person’s cognitive and functional abilities.8 Every person is a unique individual who has inherent dignity, including those living with dementia. This dignity remains with them throughout the course of their condition. Despite their diagnosis, persons living with dementia still have their own unique strengths, beliefs, values, life stories, personalities, preferences and needs. Furthermore, dementia manifests itself differently in every person living with dementia as well – no two persons develop the same exact symptoms.8
Each person should be treated with the respect a person is due. Similarly, they should be accorded with opportunities to interact positively with their physical and social environments, and to experience a good quality of life. It is essential for others around a person living with dementia to recognise that their personhood continues and find ways to uphold this personhood, even as their condition progresses. This person takes the uniqueness of each person, including their needs, wishes, perspectives, and preferences, into account. These ideas form the basis of person-centred dementia care.6 Additionally, as discussed in the article titled “Person-Centred Dementia Care“, provision of care with a person-centred approach brings about more positive effects than limitations not only to persons living with dementia, but also to care professionals and the care culture in the organisations involved. An optimal person-centred care plan lays the foundation for the delivery of good quality dementia care.9
When a person’s dementia progresses, it becomes increasingly challenging to discover their needs, wishes, perspectives, and preferences. However, person-centred care should continue to be carried out throughout the person’s experience of dementia, and there are ways of doing so.
The care planning journey may begin upon being diagnosed with dementia. As there is no “one size fits all” model of care, the key to a good person-centred dementia care plan should not just focus on effective management of dementia symptoms or activity engagement, but to build and tailor a unique plan around each person living with dementia. It is important for care professionals to take the time and effort to gather all the available information about the whole person in order to develop a comprehensive and individualized care plan for them. A well-researched and formulated care plan can serve as an important aid to care partners (care professionals and family members) to respect the individual living with dementia, and ensure quality person-centred care is delivered. It can also help everyone around to build better relationships with and understand the person as a whole, and use it to meet their needs and desires.9
The list below is a consolidation of recommendations from several requirements and toolkits, on some best practices employed during a good person-centred care planning process for individuals living with dementia:9,10
A good care plan for individuals living with dementia should look at the whole person, and comprise details on all areas of the individual’s life. It should focus not only on the person’s physical health aspects, but also on their emotional and social aspects as well. More importantly, an optimal care plan will include how staff can effectively address this wide range of the person’s needs and preferences.
Additionally, the care plan should emphasise a person’s strengths and abilities rather than disabilities, and how staff can promote their best interests and strengths. In this way, this person-centred care plan is more likely to be translated into good care practices, which can support and maintain a person’s independence and autonomy despite their dementia.
Interdisciplinary Team Approach
Mutually beneficial relationships and good communication between persons with dementia and their care partners (family caregivers and care professionals) are crucial in building a comprehensive person-centred dementia care plan. It is important for all the stakeholders to be meaningfully and fully involved, and provide their inputs throughout a care planning journey. The initial and ongoing collaboration between the person living with dementia, their family members and friends, and the care team is key to delivering quality person-centred care outcomes. A good care plan will emphasise teamwork by all stakeholders and on everyone’s responsibilities in putting the plans to practice.
As persons living with dementia know themselves best and are experts in their own health and well-being, they should be treated as equal and active partners in the creation and review process of their care plans. Similarly, they should be placed at the centre of the decision-making process and encouraged to participate in decisions involving areas of their care and intervention strategies. In this way, care plans can then be personalised to their individual strengths, preferences, values and cultures. This also ensures that the care solutions and interventions developed can successfully support their health and well-being and best meet their needs.11
Family members and/or friends are likely to have had an extended period of sharing personal experiences together with the person living with dementia before their diagnosis. They may thus be able to contribute much useful information about the person, especially when they are in the advanced stage of dementia and have difficulties communicating. Understanding how the dynamics with these family members/friends have developed over the years helps care professionals to gain a more holistic picture of the person living with dementia. In addition, family members and friends who are caregivers also require support as they carry out caregiving responsibilities. Their wishes should be taken into consideration during care planning too. Being aware of and understanding the goals of care can allow family members to support care professionals to achieve their goals with the person living with dementia.
Care Professionals: Persons living with dementia can have multiple needs and care goals that require attention and support from a team of various care professionals with different sets of specialised skills. Each team member may be responsible for a specific care goal, or be required to exchange information with one another while working together to deliver care. Furthermore, when persons living with dementia are unable to speak, the care team needs to collaborate to understand the person’s needs and preferences in order to develop an effective care plan.
As mentioned earlier, a ‘gold standard’ of the care planning process should result in the creation of a care plan, which feeds back into an ongoing care planning and implementation process.
Individuals’ likes and dislikes can change over time, and so do those of persons living with dementia. Care professionals have to be flexible in meeting these changing preferences and needs, and frequently plan for alternative scenarios and potential changes. To adapt to these changes, a person-centered care plan for persons living with dementia has to function as a living document that is updated as often as the person’s needs and preferences change. Similarly, having a completed, accurate, and up-to-date profile would enable both persons living with dementia, as well as their care partners to effectively participate in care planning and decision-making, in order to receive the most appropriate care.
To achieve the above, it is recommended that an optimal person-centred care plan should include a cyclical process. Hence, after the creation of the care plan, this plan should also be routinely reviewed and modified. It should also be updated whenever there is a change to a person’s demeanour. This involves a routine gathering, dissemination and re-assessment of information about the person living with dementia. This will subsequently enable the care team to continually develop and implement updated care solutions and interventions for them. Having the above proposed ongoing cyclic process in place will further ensure that quality person-centered dementia care, well-coordinated, and readily provided. It also ensures continuity of care, since care professionals who take over the care of the person living with dementia have access to the same set of documented information as previous care professionals working with the person. It is therefore beneficial to formalise this system, to facilitate the operationalisation of this cyclical process.
First Person Language
A person-centred care plan should provide a voice for the person living with dementia, especially at the later stages when they experience difficulties in language and communication. Hence, their perspectives should be incorporated as much as possible. Writing the care plan in first person (as if the person is speaking), with personal statements and information included, may enhance the experience of the person living with dementia, by presenting to care partners a more personal account of who they are. Some examples of these personal details include the preferred name that they would like others to use, and their strengths and interests. A good person-centred care plan that incorporates the elements recommended above can be helpful to care professionals, especially for those who are new to the person living with dementia, in understanding them as a whole person. Care professionals referring to this care plan will know what is expected of them when working with the individual too.8,12
Comprehensive & Holistic Assessments
At the beginning of a person-centred care planning process, a person living with dementia and/or their family has to work together with care professionals to complete an initial holistic assessment around him/her, evaluating all areas related to his/her well-being and health. The findings can then be translated and included into an informative dementia care plan.13 Subsequently, this evidence-based care plan is constantly updated according to findings which are regularly gathered from ongoing, comprehensive assessments, including evaluation results of the impact of care interventions and solutions.11
The following are some examples of information collected through assessments that allow care professionals to learn about the holistic health and well-being of a person living with dementia:
• Personal information from both past and present such as:
⇒ Life stories,
⇒ Physical health and abilities in activities of daily living,
⇒ Strengths and interests,
⇒ Preferences, likes and dislikes,
⇒ Beliefs and values, and
⇒ Mood, behavior and cognition;
• Physical and social environment;
• Plans for end-of-life care; and
• Needs, including physical, psychological, spiritual and social needs, etc.
These assessments’ results can be included in the person’s dementia care plan, which will then be able to support care professionals to:
• Review and set realistic goals that promote the person’s health and quality of life;
• Evaluate the outcomes and impact of care solutions and interventions on attaining the person’s care goals; and
• Enhance existing or develop new interventions that appropriately meet the person’s needs, align with their preferences, and maintain their strengths.
Read further on the various assessments that care professionals may use to measure and gather information on the multiple aspects and needs of persons living with dementia.
Elements to Include in a Person-Centred Care Plan For Persons Living With Dementia
This section lists down some examples of information to gather and document under the multiple components that can be incorporated in a person-centred dementia care plan.
• A description of the person
• Name and the preferred name to be called by others
• Date of birth
• Genogram and ecomap
• Language(s) spoken/previously spoken, preferred language(s)
• Health and social care organisations involved in person’s care
• Significant life events, such as:
⇒ Life and death events
⇒ Relationship issues and divorce
⇒ Education history
⇒ Events in life of family and friends
⇒ Life in different neighbourhoods, cities, or countries
⇒ Cultural or religious events important to the individual
⇒ Work history and changes in occupation
⇒ Both proud and difficult times
• When do memories and anniversaries of these occasions affect the person’s emotions, behaviour, and cognition?
• How have these past experiences changed their life and affect how they make sense of what is happening in the present?
Personality, Lifestyle, Likes & Dislikes, Beliefs Systems
• Strengths and abilities
• Personal possessions for everyday use
• Routines – daily, weekly, monthly, and yearly
• Likes and dislikes
• Things that he/she enjoys and does not enjoy
• Preferences and needs
• Religious or spiritual beliefs
• Cultural background
• Financial habits
• Stressors that can trigger them or push their boundaries
• Coping system or values during stressful situations
• How do they view and interpret things in the world and everything happening around them?
• Preferred daily routine, before and after being diagnosed with dementia
• Wishes that they had hoped to fulfill by the end of life
Cognitive Abilities & Impairments
• Dementia Diagnosis – The type and stage of dementia
• The effects of dementia have on cognitive abilities, such as:
⇒ Orientation to time, place and people
⇒ Processing information
⇒ Understanding spoken and written language
⇒ Planning a course of action
⇒ Abstract thinking
⇒ How do these impairments affect a person’s abilities to carry out his/her activities of daily living (for e.g., shopping or dressing)?
• Any behavior changes associated with dementia
• Remaining cognitive abilities that are retained, such as:
⇒ Engaging in humour
⇒ Experiencing emotion
⇒ Exploring the environment
⇒ Seek meaning
Co-occurring health conditions, such as:
• High blood pressure
• Heart diseases
• Acute confusional states from physical conditions, like infections, constipation, dehydration, malnutrition, which persons with dementia may be more susceptible to
• Sensory impairments
• Safety and areas of high risk
• Eating patterns, dietary restrictions
Note: Some persons with dementia may have difficulties articulating changes to their health due to memory and language problems. Their care partners must thus be vigilant to consider that it is an underlying physical health condition affecting a person’s abilities rather than his/her dementia – not every change is attributed to dementia.
Relationships With Others
• Caregiver(s) and previous caregivers
• Relationships that are supportive and damaging to them – family dynamics and situations, friendships, or familiar figures in the community or care environment (This is related to the genogram/ecogram – refer to the “life history” section above)
• Conflict resolution strategies between persons with dementia and their care partners (for e.g., any actions that may cause conflict and the patient’s views on how to resolve conflict most effectively)
• Social circumstances
• Relationships with social groups and organisations
• Preferred environment
Financial, Legal History & Status
• Citizenship and immigration status
• Whether this person have a donee under a lasting power of attorney, or a deputy
• Whether this person has a will
• Advance Care Plan
• Advance Medical Directive
• Financial and legal wishes
• Legal contacts
• Contact of representative social worker
Goals of Care & Interventions
Both short- and long-term goals, and the action plans to achieve them:
• As much as possible, providing a detailed description of the current status, functioning and/or unmet needs of the above components, will be ideal.
• From the descriptions, the person living with dementia or his/her family and the care team will then be able to:
⇒ Set realistic goals and outcomes, including the dates for completion of each goal;
⇒ Plan the therapeutic interventions and activities to meet the goals and needs; and
⇒ Inform the responsible discipline(s) and/or staff to follow up and monitor.
Below is a consolidated list of resources which may serve as a good starting point for care professionals, and health and social care institutions in the development of a person-centred care planning process and care plan for persons living with dementia.
Best Practice Guidelines Underpinning Person-Centred Care Planning Process
The Wisconsin Department of Health Services, Bureau of Aging and Disability Resources in the United States has developed a set of guidelines for long term care settings to identify key strengths and potential areas for improvement in the following nine areas, including care plans:
- Language and communication
- Care Plans
- Problem solving processes for working with behavioural communication
- Communication and leadership
- Team structure and roles
- Staff knowledge and training
- Policies and procedures
The Alzheimer’s Association created Dementia Care Practice Recommendations derived from a review of research literature, including Care Planning. These recommendations can be applied to all settings, types, and stages of dementia. The target audience for these recommendations are care professionals.
- Person-Centred Care
- Detection and Diagnosis
- Person-Cented Assessment and Care Planning (Read more about this set of recommendations here.)
- Information, Education, and Support for Individuals Living with Dementia and their Caregivers
- Care of Behavioral and Psychological Symptoms of Dementia, and Support for Activities of Daily Living
- Supportive and Therapeutic Environments
- Transitions in Care
The National Health Service of England developed a guide for primary care professionals and physicians that is designed to standardise and improve the care planning process to support persons living with dementia, by highlighting some of the good practices.
This guide developed by the Mental Welfare Commission for Scotland aims to help care professionals working in health and social care settings that serve persons and their caregivers who use dementia, mental health and learning disability services. This guide talks about the underlying principles of care planning and provides best practice suggestions for developing person-centred care plans.
Social Care Institute for Excellence advocates for the position that a good person-centred care plan is essential in protecting a person’s basic human rights, freedom and choices when individuals are at their most vulnerable. This resource demonstrates how the care planning process can embed and comply with the principles of the United Kingdom’s Mental Capacity Act to protect individuals who lack or have fluctuating capacity to make decisions, especially when it comes to their own care, life, and death. This report emphasises that even when a person lacks or has fluctuating capacity, the care plan in place should maximize their freedom to make decisions about their own care, and help to make decisions in their best interest and protect their human rights even when they are deprived of their liberty.
Toolkits to Help Gather Information on All Aspects of a Person’s Life and Develop a Person-Centred Care Plan
May, Edwards & Brooker (2009) shows in detail how to plan care by taking into account the perspectives of a person living with dementia. It presents and provides:
- Using the Enriched Model of Dementia8 to develop an enriched care plan;
- The five stages of enriched care planning;
- How communication is key to the ongoing process of profiling a person living with dementia
- An Enriched Profile and Care Plan template to document all the information gathered about a person living with dementia, and to plan and develop the person’s needs and care partners’ person-centred follow-up actions and interventions;
- On top of the Enriched Profile and Care Plan template, this book offers additional profiling templates which lists out questions that care professionals may use to ask the person living with dementia and/or their loved ones, in order to gather all the information to profile the person. These templates include:
⇒ Lifestyle and future wishes profiling template
⇒ Personality profiling template
⇒ Health profiling template
⇒ Capacity for doing profiling template
⇒ Cognitive ability profiling template
⇒ Life at the moment profiling template
- Care professionals can photocopy these templates to use in their work; and
- Real case examples to illustrate the care planning process.
The South West Dementia Partnership from the United Kingdom developed two templates of person-centred support plan for persons living with dementia.
This support plan also draws on the work and Enriched Model of Professor Tom Kitwood. It again emphasises the importance of knowing the person living with dementia as a whole, taking into account their perspectives, seeing the world from their point of view, and respecting their wishes and needs when completing the support plan with them. The guiding principle of this plan is that it should enable and support the independence and autonomy of a person living with dementia as much as possible.13
These templates are free for download. Care professionals may use them to obtain information from the person through discussion or close observation.
1. A top sheet to provide care professionals a quick reference of who the person living with dementia is – preferred name, background, likes and dislikes, and needs, etc.; and
2. A support plan for care professionals to record the following 6 aspects of the life of a person living with dementia in detail:
- Cognitive Ability
- Physical Health
The Alzheimer’s Society created a leaflet titled ‘This is me’ that care professionals can use in any setting (at home, in hospitals, or long-term care settings) to gather and record the following information about a person, in order to better understand who the person is and provide the care that is individualised to their needs:
- Cultural and family background
- Important events, people and places from their life
- Preferences, routines and habits
- Communication and mobility
- Burt, J., Rick, J., Blakeman, T., Protheroe, J., Roland, M., & Bower, P. (2014). Care plans and care planning in long-term conditions: a conceptual model. Primary health care research & development, 15(4), 342-354. https://doi.org/10.1017/S1463423613000327.
- Mental Welfare Commission for Scotland. (2019). Person centred care plans: Good practice guide. https://www.mwcscot.org.uk/sites/default/files/2019-08/PersonCentredCarePlans_GoodPracticeGuide_August2019_0.pdf
- LeadingAge Center for Aging Services Technologies. (2016). Shared care planning and coordination for long-term and post-acute care: A primer and provider selection guide 2016 [White paper]. https://www.leadingage.org/sites/default/files/Shared_Care_Planning_and_Coordination_Whitepaper.pdf
- Gibson, P. G., & Powell, H. (2004). Written action plans for asthma: An evidence-based review of the key components. Thorax, 59(2), 94-99. doi: 10.1136/thorax.2003.011858.
- Goodwin, N., & Lawton-Smith, S. (2010). Integrating care for people with mental illness: The care programme approach in England and its implications for long-term conditions management. International journal of integrated care, 10, https://doi.org/10.5334/ijic.516
- Kitwood, T., & Bredin, K. (1992). Towards a theory of dementia care: Personhood and well-being. Ageing and Society, 12(3), 269-287. https://doi.org/10.1017/S0144686X0000502X
- Fazio, S. (2008). The enduring self in people with Alzheimer’s: Getting to the heart of individualized care. Baltimore, MD: Health Professions Press.
- Kitwood, T. (1997). Dementia reconsidered: The person comes first. Buckingham: Open University Press.
- Commission for Social Care Inspection. (2008). See me, not just the dementia: Understanding people’s experiences of living in a care home. https://staging.dementiaroadmap.info/wp-content/uploads/seemenotjustthedementia.pdf
- The Wisconsin Department of Health Services Bureau of Aging and Disability Resources. (2014). Person-directed dementia care assessment tool: A guide for creating quality of life and successfully refocusing behavior for people with Alzheimer’s disease and related dementia in long term care settings. https://www.dhs.wisconsin.gov/publications/p2/p20084.pdf
- National Health Service. (n.d.). Personalised care and support plan. https://www.england.nhs.uk/ourwork/patient-participation/patient-centred/planning/
- Allen, K. (2020, January 16). Developing a dementia care plan. BrightFocus Foundation. https://www.brightfocus.org/alzheimers/article/developing-dementia-care-plan
- Care Fit for VIPS Partnership. (n.d.). Care Fit for VIPS. https://www.carefitforvips.co.uk/
- May, H., Edwards, P., & Brooker, D. (2009). Enriched care planning for people with dementia. London and Philadelphia: Jessica Kingsley Publishers.
- South West Dementia Partnership. (2010). Person centred support plan for people with dementia. https://dementiapartnerships.com/wp-content/uploads/sites/2/person_centred_dementia_support_plan_A4.pdf