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Informal Carers (including family, friends)

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The person- centered approach according to Tom Kitwood.
In 1906, the German physician Alois Alzheimer described dementia as a disease. Until then, dementia was considered part of growing old. Old people went into “childhood”. Throughout the 20th century, the paradigm of science has prevailed. Medical science was popular and from around the 40s onwards we saw great advances in medical research, among other things within psych pharmaceuticals. During this period, many people with dementia were admitted to psychiatric wards if their behavior seemed incomprehensible and they were treated with psychoactive drugs. Later, persons with dementia came to nursing homes where they were met with “reality-orientations” (Holden and Woods 1988), which meant that the persons with dementia constantly was targeted if they said something that was not right. The approach was intended to calm down and to reduce disorientation. The practice just showed that the persons with dementia were grief-stricken several times a day if, for example, they asked where their mother was and were told that she had died long ago. In the eighties, Tom Kitwood begins to work with the person-centered care. It was also a time when the biomedical paradigm was challenged by a more psychosocial approach to people in general and to persons with dementia especially.

Figure 1. 1992 Tom Kitwood: Towards a theory of personhood in dementia care

Tom Kitwood builds his model based on the German philosopher Martin Buber’s understanding of the relationship between people as an “I -you” relationship, as opposed to an “I – it”, where there is a reification of the counterpart. Psychologist Carl Roger’s thinking about a person-cantered approach in the therapeutic relationship has also been of great importance. Tom Kitwood’s person-centred approach should be seen as a criticism of the approach to and treatment of persons with dementia. A care that emphasizes the person’s disability and illness. He believes that as part of our cultural heritage we have a degrading approach to people with cognitive disabilities.

According to Kitwood, the person-centred approach is to see the person with dementia as an equal person with feelings, rights, desires and a life story that affected the person even before he/she got dementia.

Kitwood has made an alternative definition of dementia: of what dementia is and which factors affect the individual person. He thinks that a person with dementia must be understood from both a biological, a psychological and a sociological perspective.

Definition = P + B + H + N + S

  • Personality – the person’s resources and defense mechanisms
  • Biography – life story / life experiences
  • Health – physical condition and sharpness of senses
  • Neuropathology – changes in the brain cells
  • Social psychology – conditions in the environment – how do we meet the person

P. You cannot do anything about the personality if the person has dementia, but you can take the background of the individual into account, his resources and limitations.

B. The biography and life story are again as it is, but it is a good starting point for any action.

H. We must pay attention to the health of the citizen as a whole, often the individual has more diseases or an acute disease, and dementia is not the only disease. The person should of course be treated in case of a possible illness.

N. We do not know much about the neuropathological changes in the brain. Medicine works for a period and can improve the ability to function for a period but the effect is not lasting. We need to consider the abilities of the individual and ask of each person with dementia what is relevant for his/her level.

S. On the other hand, we can do a lot in relation to social psychology. How do we relate to the person and how do we create an environment that the person can enjoy? Kitwood emphasizes that the person retains his value as a human being throughout the process of the disease. This implies that you get the opportunity to engage in relationships that you appreciate and where you yourself are appreciated. As a human being, one needs to be valued in a community. We are as people dependent on each other’s recognition, respect and trust. These needs do not disappear because you get dementia, but it gets harder to express your needs and fulfill them. It is up to others to be aware to meet these basic human needs. The person with dementia cannot do it himself/herself.

In his work, Kitwood emphasized six psychological needs that are essential to all people:

  • Love: unconditional acceptance and empathy.
  • Comfort: the person needs security, warmth and proximity.
  • Identity: is connected to know who one is and has a connection with the past.
  • Affiliation: linking ties, relationships with others. To experience confidence and trust in the relationship, so that you have someone to go to in difficult situations.
  • Meaningful employment: to participate in your own life in such a way that you use your abilities, strength and experience. That you are needed and that you have something to do.
  • Inclusion: Being part of a social community and feeling accepted.

People with dementia need support to meet these universal needs.

Kitwood considers it as a conscious or unconscious part of our cultural heritage, that we think that people with mental disabilities are inferior.

The good way of meeting people with dementia is what Kitwood calls “Positive Person Work”. It represents a new care culture focusing on everyday life and community. The positive personal work is what helps build the self-esteem and dignity of person with dementia and contributes to well-being and quality of life.

As a caregiver to a relative with dementia it is important for the person that you

  • appreciate the person with dementia as a unique and equal person despite the mental deficiency.
  • organize an individual care and treatment based on the specialness of each individual.
  • try to understand what is best for the person with dementia from the perspective of the person concerned.
  • protect the person’s self-determination, rights and opportunity for co-determination.
  • See the person with dementia as an active partner. Seek to involve the person’s social network in care
  • are trying to establish a personal relationship with the person with dementia
  • create a supportive environment around the person

In addition to basic physical needs, it is therefore equal essential that you generally focus on the fact that every person with dementia needs:
• support in maintaining his/her identity.
• help to make the most of his/her resources.
• help to remain an independent social person.
• help to maintain his/her identity as much as possible.

This approach does not have an actual counterpart. It forms the basis for most recent initiatives, for example, Bill Thomas, Eden Alternative (Thomas 1996), and Jane Verity’s work to bring the “Spark of Life” back to persons with dementia. The work with the person centred approach is still ongoing and Tom Kitwood’s successors in Bradford Dementia Group, Dawn Brooker introduces the model VIPS as a framework for a person-centred care.
• V represents the person-centred approach as the overall value
• I stand for the individual approach, no two people are same
• P stands for the need to take the perspective of the person with dementia, nonetheless it also applies to people who do not have dementia
• S emphasizes the need for a socially supportive environment

The four elements are equally important.

There is strong evidence that working systematically with the person-centred approach causes fewer conflicts regarding the care of the person and the person is less agitated. In relation to persons with dementia, the person-centred approach also contributed to the fact that less medication is necessary to be able to handle agitated and unrestrained behaviour.

How to create a good life.

How do you create a good life in at home despite the person’s disability? Here, the person-centered approach is also the key. We need to find out what it is that the individual appreciates and use that as starting point.
More generally, one can say that it is about avoiding what the “Eden” founder Bill Thomas calls “care disorders”: loneliness, helplessness and boredom.

– Loneliness: Is the pain we feel when we want, but cannot share the presence with anyone.
– Boredom: Is the pain we feel when we lack variation and spontaneity in everyday life
– Helplessness: Is the pain we feel when we always receive care and do not get the chance give someone our care.

Everyday life in focus

It is very important that you and the spouse with dementia continue your daily living as normally as it is possible. Good routines and repeated plans are useful and give the person with dementia overview and certainty during the day. It is very good for the person with dementia to be a part of the daily doings such as meals, laundry and cleaning. The persons with dementia cannot do the things alone but they can be part of the doings together with the spouse. It is important not to take on the things they were doing before, because this leaves the person with the feeling of helplessness and boredom. We all need occupation that is meaningful for the individual.  Every day’s many small tasks are also important for the experience of identity.

Everyday activities can help to avoid further loss of function and with age, greater effort is required to avoid function and skills loss. As age-related physical capacity drops (e.g. muscle strength) and brings older people closer to a critical physical capacity threshold, it is necessary to perform daily tasks.

Everyday life is composed of activities and participation and the importance we attach to it. For one person it is important that he/she gets a specific cup for the morning coffee, for another it may be very irrelevant. It is necessary to understand what is important for the individual person with dementia.

Every day, there are habits and we fulfill certain roles based on the values we have. Habits enable you to recognize a situation and act without consideration, attention and reflection. That is, permanent habits enable automated behavior. Therefore, habits are good as they create peace of mind. Roles regulate which behaviors are in order and organize the daily activities. If I am a housewife, I am expected to act in a certain way, so roles affect the way and content of the interaction.

Roles require solving routine tasks. Should you be a host at a party, it cannot be discussed who says, “You are welcome”. In addition, roles divide daily and weekly courses into time blocks when we perform different roles in a week. Perhaps we attend church on Sundays or meet with old work colleges on Tuesdays. Persons with dementia needs help to fill the different roles they have.

Lack of ability to maintain roles, values, and interests influences the beliefs of the person with dementia in their own ability to act negatively. For the most vulnerable person with dementia, the construction of a fragmented self-image can be supported when they are with people who knew them as they were before they got dementia. To be able to engage in significant activities recognized in one’s culture affect health, well-being, and help make life meaningful. Feeling useful, having control, creating and maintaining contact with other people allows for personal development and, not least, self-confidence.

It can be difficult to find out which activities make the individual happy, but most people like stimulation of the senses.
Therefore, most people find that stimulation of the tactile sense is nice; it may be scalp, facial or foot massage or a spa bath. The other senses can also be stimulated through music, dance or singing. Taste and smell are stimulated when we cook or bake together in the home. Watching that the food is being made, perhaps to give good advice is also to be active. Scent and taste of good food, wake up the appetite, increase the well-being, entice small eater to taste, wake up memories and provide good conversation topics. The movement and positioning can be stimulated through play and movement.
According to the Eden concept, a daily life must be ensured, the opportunity to have duties and enjoyment, privacy and communities, to be outdoors and indoors, as well as having the possibility of having company of animals and children while providing the necessary and qualified care.