Dementia will result in cognitive changes, but the person remains an individual with a personal history, experiences, likes and dislikes. It is important that these are known and understood. It can be particularly distressing for a person with dementia if those around them treat them differently, as if dementia were their whole story. Similarly, providing support and care is but one part of what family members, whānau and friends do. As individuals, they too have personal histories, experiences, likes and dislikes. They will play other roles in their families and have interests that are important to them. What does it mean in practice? Acknowledge and celebrate what the person with dementia has done in his/her life and can still do. Treat the person as an individual with their own values, interests, likes and dislikes. Talk to the person, other family and whānau members and friends about the things that have given meaning and hope to their lives. Encourage activities that are meaningful to them as much as possible. Take time to do other things outside of providing support and care that are important to you or that you enjoy. Independence Why is it important? Being independent and making our own choices helps us maintain a sense of self and feel good about ourselves. While some choices are simple, others are complex and require time and help to reach decisions or act on them. People have the right to make decisions that others might disagree with or think unwise. A useful principle is dignity of risk which is about the right of people to take risks in their everyday lives. A better quality of life may be achieved by supporting activities that have a level of risk. It is important to recognise that a person’s wellbeing is about much more than being healthy and safe. What does it mean in practice? Recognise and support the person’s independence and encourage them to make choices. Actively support the person to continue doing the things that are important to them or that they enjoy. Recognise that interest in particular activities or ability to undertake them may change over time. Recognise that risk taking is part of living and that accepting some risk might mean a better quality of life. Think about how to manage risk rather than limiting or restricting activities where there are safety concerns.
Everyone is entitled to be consulted about their care, even if the ultimate decisions must be made by others. If the person is unable to communicate verbally, pay attention to how they express their wishes and feelings through behaviour and emotions. Interdependence Why is it important? Few people live in total isolation. People are essentially social beings, dependent on each other and connected by . Trusting relationships with family, whānau and friends are especially important to people in the later stages of dementia, when they are more vulnerable. These relationships may change over time and new relationships may develop. Family, whānau and friends providing care need to recognise that there may be times when they are not able to provide care. It is good to plan ahead and know who will provide care if you become sick or have to take care of other responsibilities. What does it mean in practice? Providing support or care is not a one-way process with one person giving and the other receiving. There can be mutual benefit from the caring relationship. Support the person to continue playing their role within the family/social group as much and as long as possible. Encourage the person to decide at an early stage who they trust to make decisions in their best interests. They may choose different people for different kinds of decisions. Talk to others providing support or care, including health professionals, so that you understand what is happening and how best to provide care and support. Accept that the person may develop new relationships over time and limiting choices can be harmful. It is okay for close family members and friends to also develop new relationships. Best interests Why is it important? Any person’s best interests are a balance between what is important to them and what is important for them. There are no absolutes and what is important may change over time. In the case of a person with dementia, their best interests are inevitably linked to those providing support and care, and may even be inseparable. The interests of both those providing care and the person with dementia must be taken into account. Some people providing care may find it difficult to think about what is best for themselves because of a previous commitment or cultural expectation to provide care.