Introduction
The term “person-centred” care is a phrase that has been used for some time now and is synonymous with quality care. Originally introduced as a more holistic approach to care, it is often used to describe care for people with dementia.
Reflecting on this idea and how it applies to caring for family members with dementia, in this article, we consider the following:
- What does person-centred care in dementia look like?
- If it exists, how do we, as family carers at home, support our loved ones in this way?
What is person-centred care?
The concept of person-centred care was initially developed in the 1950s by psychologist Carl Rogers. This is different from the traditional definition of care in that it considered the recipient of the care as the expert in recognising their own care needs and, therefore, able to identify personalised solutions within themselves.
By focusing on what matters to each individual as a person (a holistic approach), it was viewed that the well-being and quality of life of each individual could be improved.
In the 1980s, Professor Tom Kitwood, at the University of Bradford in the UK, took this concept and applied it to dementia care. As opposed to focusing on the disease, a shift focused on the person’s uniqueness and preferences. Professor Kitwood placed the importance of “personhood” at the centre of caring for people with dementia by providing what he termed “positive person work”.
In summary, based on the concept of supporting people with dementia holistically, person-centred care challenges the notion of hopelessness and despair after a diagnosis of dementia to one of well-being and enablement.
Over the years, different elements of person-centred care have been articulated, including:
All of these concepts firmly place the person with dementia at the centre of the care setting.
Driving Forward the Notion of Person-centred Care in Dementia
In the UK, as in other countries, the drive toward person-centred care for dementia is a key policy strategy. Each country has its own individual programmes. In Scotland, initiatives such as The Social Care: (self-directed support) (Scotland) Act 2013 offer individuals flexibility over the type of support people living with dementia receive. The provision of one year of post-diagnosis support incorporating a person-centred plan, the establishment of national standards in dementia care, and the introduction of the “8 pillar model of care” are just some of the strategies aimed at improving the care of people with dementia in Scotland. Furthermore, Health and Social Care organisations also continue to be guided by their own professional codes of conduct with strategies in place, such as the promotion of excellence in dementia care. Each government worldwide will have a similar set of plans and policies in place.
Is Person-Centred Care in Dementia a Reality or an Ideal?
Kitwood originally developed his theory of person-centered care in response to the “gap” in dementia care. In support of this concept, in recent years, many family carers in Scotland have continued to voice concerns that this gap still exists today.
Barriers to Person-Centred Care in Dementia
In terms of the provision of dementia care that is person-centred, in my own opinion, a few areas that contribute to the ongoing presence of the ‘gap’ include:
- Lack of clear definition of person-centred care with detailed guidelines.
- A need for a breakdown of what person-centred care means for people at different stages of dementia.
- A need to understand if it means different things for different diseases, ages, gender, sexual orientation, or ethnicity.
- Lack of skilled training in dementia care.
- The ongoing negative stigma surrounding dementia.
- Every person with dementia experiences the condition differently.
- The uniqueness of people with dementia.
Despite the fact that there are common symptoms, every person with dementia differs in terms of the disease trajectory. Essentially, this is because we all have different life experiences, family relationships, personal histories, coping mechanisms, social networks, and more.
“Each person has a different pathway through the illness and so requires different care needs.”
According to statistics, there are an estimated 850,000 people with dementia in the UK, 55 million globally, set to reach 78 million by 2030 and 139 million by 2050. This represents a tall order in terms of the provision of person-centered care.
One of the reasons for this is the number of different variables. As in the words of the family carer below, there are many variables, perhaps too many, to provide a “textbook” definition or workable blueprint of what constitutes person-centered care in dementia.
Moving Forward as a Family
Caring for someone with dementia is a dynamic concept that can change from day to day. Essentially, it is for this reason that often, at home, many family carers succeed, albeit on a trial and error basis only.
Life history, personal preferences, relationships (past and present), and social environment are just some of the key elements important in supporting a family member with dementia in moving forward. For many family carers at home, a huge concern lies in fear of failing. And yet, family carers are best placed in supporting a family member with dementia to receive truly person-centred care, whether in providing the care at home themselves or in consultation or representing a loved one with formal care partners.
Family members often feel incapable of caring adequately for their loved ones at home. And yet, as highlighted, they are ideally placed to provide truly person-centred care, having spent a lifetime with the person. Instincts from years of knowing our loved ones can help us make correct judgments in our care decisions. Read more on my views on this in the article: Taking Control: A positive shift of mindset: Avoid burnout by becoming empowered. Or have a look at Dementia Caregiver: With You. For You. About You.
Looking Past the Label
Often after a diagnosis of dementia, loss becomes the focal point. Yet, many people with dementia can continue to have active and meaningful lives for many years. Furthermore, personality traits and emotions (such as joy, happiness, humour, and more) remain. As family members, we know each other inside out. As a result, we are in an ideal position to help nurture and support a loved one in a way that is in line with their preferences and personality.
Opportunities to provide Person-Centred Care
Kitwood proposed that to provide care that was individual to each person (person-centred), we need to begin with love as a central component. On top of this, we surround love with five further psychological needs: namely comfort, attachment, inclusion, occupation, and identity.
I think you will agree that everyone has these needs. This doesn’t change just because someone is diagnosed with dementia.
- Love: We all seek love, to love someone, and to be loved. This can materialise in many ways. Some of these include having empathy, sharing a meal, walking together, holding hands, or just being there for someone in their time of need.
- Comfort: This can include being free of pain. It can be as simple as being warm and comfortable at home, where we feel safe and cared for.
- Identity: Our own personal self is unique to each and every one of us. We have our individual likes and dislikes, personal style, abilities, and strengths. It would not do if we were all the same.
- Occupation: We all like to have meaning in life and feelings of worth. This can include being engaged in daily activities, playing a role at home, helping around the house, or in the garden. We all benefit from feelings of purpose.
- Inclusion: Feelings of belonging and being part of something are very important to us all. Unquestionably, the symptoms of dementia can be frightening, so ensuring the person remains part of things is important.
- Attachment: Who and what we connect, whether family, friends, a group or the community, is crucial for our well-being.
There are lots of ways we can help our loved ones to receive the best care possible. Person-centred care looks at the person as an individual. It looks at their lifestyle, life story, career, what brings them joy, how they are in relationships, etc. These are all the areas that make us up as people. These are all things that, as family members, we tend to know well.
Promoting Person-centred Care for our Loved Ones
Often in dementia, choices can be taken away. This can lead to frustration or feelings of lack of autonomy or giving up. That said, as family members, however, if we can look at the person and not the medical condition, we can continue to honour the personhood of our loved ones. We can support the choices they put in place. This will not cure the disease. Nonetheless and of great important, however, it will create the right environment to give people strength and hope in living as best possible. This helps everyone to move forward more positively.
Thank you for reading. If you have found this article helpful, please like, share, and comment. You may also find my other articles on self-care for family carers and therapeutic interventions for people with dementia.