The Importance of Person-Centred Care for People Living with Dementia

By Julie Booth, Consultant Nurse for Dementia Care at Exemplar Health Care (www.exemplarhc.com)

For people living with dementia, person-centred care should be at the heart of all care plan- ning and delivery.

Person-centred dementia care focuses on knowing the unique person through mean- ingful relationships, that foster choice, independence, purpose and belonging.

In this article, Julie Booth, Head of Quality at Exemplar Health Care, talks about what person-centred care looks like for those living with dementia, and how to foster a person-centred culture for dementia care.

ONE SIZE DOES NOT FIT ALL

As Professor Tom Kitwood famously states, “when you’ve met one person with dementia, you’ve met one person with dementia.”

This statement broadly supports the principles and ethos of person-centred dementia care – that the individual living with dementia is more than their symptoms or diagnosis.

People living with dementia should never be defined by their diagnosis. All too often we hear phrases such as: “Mrs Smith has dementia so therefore can’t do this or understand that” or “well, Mr Jones is acting that way because he has dementia.”

For people living with dementia, person-centred care should be at the heart and centre of all care planning and delivery, especially when someone moves into a care home setting.

Although the principles associated with any effective model of person- centred dementia care should include knowledge and understanding of dementia and the impact the disease process can have on brain functioning, it should also include knowledge and understanding of each individual’s personality, life history, health and wellbeing.

PERSON-CENTRED CARE FOR PEOPLE LIVING WITH DEMENTIA

Person-centred care is an approach that centres care around the individual, promoting the ethos that every person living with dementia is unique.

Person-centred care values choice, dignity, respect and purposeful living, honouring personal preferences and goals, and promoting meaningful relationships and communication across all care partners.

It’s important to know and understand each individual’s beliefs, values, interests, abilities, both past and present, which can then inform the subsequent interactions and experiences each person has when living in a care setting.

A quality person-centred care model should also include an under- standing of and reference to social psychology. This is important in understanding the impact that a new environment and day to day interactions surrounding the person living with dementia can have on their overall wellbeing.

If the right approach is taken, by trained care staff, then the care home environment can be both supportive and enhancing for those living with dementia.

However, if a person-centred approach isn’t taken, care home environments can become institutionalised and damaging, in particular when routine and task driven practice takes precedence over the promotion and delivery of personalised care.

CARE PLANNING TO PROMOTE PERSON-CENTRED DEMENTIA CARE

Care homes should ensure that they have a care model that can encompass all aspects of person-centred dementia care. This will enable staff to gather all the critical information they need to know about each individual before they actually come into the care setting, as they are then admitted and on an on-going basis. This is to ensure that the care can be adapted and developed as the individual’s needs change.

This approach should be done both with the person with dementia as well as their loved ones and current care givers, so that everyone can feel part of the process.

Regular review of all care plans is vitally important, and common practice would be to review each individual’s care on a monthly basis, determining if needs have changed and adapting new care plans that better meet need but don’t detract from the need to remain personal to that individual’s life history and personality.

This should always be done by involving the person with dementia and their loved ones as much as is possible, finding the best way for each individual to engage with them and have meaningful interactions and discussions.

This could involve staff adapting their styles of communication, to better enable the person with dementia to interpret and understand, or choosing different times of the day to have the conversations, when someone is more receptive and able.

The main aim of the care we provide should always be to maintain and facilitate as much independence as is possible, and as dementia progresses this may mean adapting certain activities to be able to better meet people’s needs, whilst maintaining meaning, participation and enjoyment.

MAKING A HOUSE A HOME

Often, when an individual moves into a care home setting, the new home does not immediately feel like a home, the walls and décor don’t seem familiar.

It’s important that at least one small space feels more familiar to that person. The care home team should encourage people with dementia and their loved ones to bring items of furniture, mementos and photos that were present in their previous home setting, that can be used to make bedrooms feel more like a place to call home

The care home should provide an environment that facilitates orientation and independence as opposed to confusion and reliance on others.

Some of the ways that care homes can do this are:

signage that appropriately indicates where things are (including important rooms such as toilets, bathrooms, bedroom and dining room)

communal areas decorated in such a manner as to further aid orientation and reduce confusion and visual disturbance – for example, avoiding patterned carpets that may trigger the illusion of insects or mice running around which can be unsafe.

People with dementia should be encouraged to participate in the everyday tasks they would normally be doing in their own home such as cooking, washing up, cleaning, folding laundry and gardening.

This will help to foster a sense of “home” and belonging and give more meaning to each day and to where they are and why they are there.

The development of this sense of daily routine will help people with dementia to establish themselves in their new home, and provide further cues to aid orientation to time and place and improve things such as eating and drinking, physical and emotional wellbeing.

TRAINING FOR CARE WORKERS

A quality person-centred care model also acknowledges that professional carers also need support and training to be able to effectively meet the needs of those living with dementia.

Training programmes should include an in-depth understanding of what dementia is and how it can impact the brain and the overall functioning of an individual. This should be coupled with an understanding of the different types of dementia and how they can differently affect the brain and in turn how symptomology can differ between different types of dementia.

Training should also include the development of knowledge what person-centred dementia care should look and feel like, through the eyes of each individual based on the premise of “would the care I am delivering be good enough for me and my loved ones.”

To ensure that the best training is being given, ongoing support and supervision is also vital for carers. This can be done through individual clinical supervision, but it can also be done through group reflection, facilitating group discussions and allowing a staff team a sense of ownership of the care they are delivering.

Teepa Snow has a powerful and passionate quote that tells us, “Dementia doesn’t rob someone of their dignity; it is our reaction to them that does.”

Any care setting that is delivering a truly person-centred model of dementia care will have residents who feel valued, and whose distress is understood from an individual perspective. This will be based on a deep understanding of the known information of each person’s history, cultural identity and beliefs. This enables professional carers to try to interpret the world through the eyes of the person living with dementia and in turn adapt and shape care based on empathy and compassion.

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