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 were 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 being challenged by a more psychosocial approach to people in general and to persons with dementia especially.
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-centred 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 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 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 as they are, but they are a good starting point for any action.
H. We must pay attention to the health of the person 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 other 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 the staff 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.
Malicious social psychology
Tom Kitwood believes that what he calls malicious social psychology can affect people with dementia so they get worse and worse and ultimately do not interact with the outside world or it can cause serious behavioural problems.
The following are examples of what he means when he says malicious social psychology:
- Threats: to instill fear by using threats or physical power
- Neglect: Refuse to give the attention or fulfill an obvious need
- Too high pace: To give information too fast, to present choices or to expose the person to pressure to make things faster than person may endure
- Treat like a child: To treat a person downloading as if he/she was a small child
- Put stickers on persons: to prosecute or mention the person in an abusive way
- Downward assessment: to tell a person that he / she is incompetent, useless, and worthless
- Complaint: – To accuse a person of actions or lack of action arising from the person’s inability or misunderstanding of the situation
- Treason: To use forms of deception in order to distract or manipulate a person or force them to be compliant.
- Undervalue the person: Not to recognize the persons the subjective reality or feelings
- Incapacitación – Do not allow a person to use the abilities he actually has; not being able to help him complete actions.
- Interference: – Force a person to do something to override the desire or refuse the appropriate options
- Interruption: – interfere suddenly or interfering with a person’s action or consideration: to commit gross breach on their frame of reference.
- Objectification: To treat people as if they were dead things.
- Stigmatization: To treat a person as if he/she had died, comes from the outer space or as scum
- Ignoring: Continue speech or action with a third person as if the person is not present.
- Banishment: To send a person away or to exclude him – physically or mentally.
- Open up to ridicule: To make fun of someone’s “strange” actions or remarks, teasing, humiliating or joking at the expense of the person.
The purpose of this “professional” behaviour towards the person is not intended malignant but the result of it is that Kitwood considers it as a conscious or unconscious part of our cultural heritage, that we think that people with mental disabilities are inferior. They are parked and treated accordingly. It requires constant conscious work with the person-centred model to avoid any of the above examples sneaking into care. It requires openness in the team of employees and management, so any downward treatment does not get a foothold in the care but is reprimanded.
The opposite of malicious social psychology is “Positive Person Work”. It represents a new care culture focusing on everyday life and community. The positive personal work is what helps building the self-esteem and dignity of person with dementia and contributes to well-being and quality of life.
Good practice in implementing person-centred care of people with dementia in a nursing home
In order to implement the person-centred care in an organization, it is necessary to have a clear vision and an instruction on how to reach the vision. The vision must create a common direction for the work and be collaboration between management and employees. In the daily work, the leader must go ahead and show that she/ he respects the goals and vision. Tom Kitwood believes that treating his own staff “person-centred” is a prerequisite for developing the desired care culture. There is a need for the staff of an organization to feel recognized by the leader, being included and respected in the community. Management must give the staff individual freedom and responsibility always to act in the interests of the person with dementia within the current framework of care. A person-centred care culture implies that the organization is open to and provides room for learning and development.
The person-centred approach implies that staff work with the residents’ personal goal care plans based on the person’s own preferences and goals. The goals are revised on a continuous basis. The resident must be considered a member of the team and the person must have a contact person
The individual employee will need to have a number of skills to work with person with dementia in a person-centred approach.
The employee must
- 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
- try 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 essential that the staff generally focus on the fact that every person 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. The VIPS model deals directly with the person, who is dependent on care and not about the organization, but the organization must have the approach as a value basis and have a strong vision that it can create a common direction for the work, and it should therefore be simple, clear and used in everyday life. Thus, it is important that the staff have helped create the values and that they have discussed the importance of the values in their daily work within the team.
There is strong evidence that working systematically with the person-centred approach causes fewer conflicts when performing the care of person with dementia and the person is less agitated. In relation to person with dementia, the person-centred approach also contributes to the fact that less medication is necessary to be able to handle agitated and unrestrained behaviour. In Norway, the VIPS model is being used in nursing home as a model of understanding. The staff are taught how to use the model and they hold structured and regular treatment meetings. The results show a reduction in agitation levels, in psychotic symptoms as well as a reduction in other symptoms.
In summary:
• Persons must be treated individually in a manner that reflects their own values. We must be able to see life from the person’s perspective and support his/her social life. Everyday life should, as much as possible, be a result of the residents’ wishes and needs, and not consist of medication plans, emergency plans and thus like.
• The staff must work interdisciplinary in teams and the resident must have one single contact person. The team must be flexible, coordinate the services, inform and communicate with each other, as well as other care providers outside the home. In addition, they must cooperate with relatives.
• Effort should be made to provide improvement in quality of life for the person in need of care. Focus on better utilization of social resources.
There is more research showing that the person-centred approach has an impact on the quality of life of persons in need of care, including The Well-Being and Health for People with Dementia (WHELD)
How to create a good life.
How do you create a good life in the nursing home despite the person’s’ disability? Here the person-centred 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 to give someone our care
(“As it used to be at home” by Ulla Skovsbøl in cooperation with Eden Denmark by Åse Porsmose and Karin Dahl)
The focus in the nursing home should first be: the resident’s home and then secondly a workplace. Everyday life should be governed by the wishes and needs of the residents instead of medical plans, care schedules and the like. A real home, where residents at least determine more and where equality in human relationships affects everyday life. There must be focus on cosiness, everyday life and the individual person.
Everyday life in focus.
The idea is that residents have a real influence on their own lives, and it is their own habits and needs that largely govern everyday life. Daily doings such as meals, laundry and cleaning should no longer take place far away from residents, but close to them, and in cooperation with them. A nursing home is a place where people who need care can live a life that is meaningful for the individual. A life where not only the care of the body is important but also social activity. Throughout a long life, we daily perform a number of big and small tasks. Every day’s many tasks are important for the experience of identity. Everyday activities can also 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) bring older people closer to a critical physical capacity threshold, it is necessary to perform daily tasks. Put in another way, it increases the vulnerability of the elderly as their reserve capacity decreases. 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 the differences between people’s everyday lives.
Every day, there are habits and we fulfil 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 behaviour. Therefore, habits are good as they create peace of mind. Roles regulate which behaviours 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.
Many elderly persons in nursing homes suffer a massive loss of roles. Family roles sometimes are the only ones left and they may be hard to fill in, the way the person wants to. Lack of ability to maintain roles, values, and interests influences the beliefs of older people in their own ability to act. For the most vulnerable elderly, 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 making 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. Here the life story is important, otherwise, one must be observant in the approach to the individual. Various activities generally meet human needs.
For example, it may be difficult to meet the need for warmth and touch when one lives in a care/nursing home; many are only touched in intimate care situations. Most people find that stimulation of the tactile sense is pleasurable; 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 staff cook or bake together with the residents. Watching 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 a 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. A natural everyday rehabilitation effect is achieved because of the efforts of competent and incentive staff in a respectable, equal partnership with the residents and their families. Hope, dignity and well-being are preserved.