PODCAST / CARING FAMILY FOCUS Hello everyone! Today, we want to talk to you a little bit about attitude and stigma towards people with dementia. There are three kinds of stigma, such as public stigma; which refers to the general public that carriers a negative belief towards dementia, the self-stigma; experienced or internalised negative belief such as perceptions of the people with dementia or their carers about the disease and their own perception and finally the spill-over stigma; which refers to negative experience due to social proximity, such as stigma of caregivers towards people with dementia and caring after them due to experience of the person with the illness. Stigma and negative attitudes towards caring after people with dementia can negatively impact the caregiving relationships. People that had already had some contact with dementia person with dementias in the past showed lower level of personal avoidance. It was also found out that experiencing negative views and desire for avoidance of dementia person with dementias positively correlates with not seeking help and delaying seeking help in experiencing early signs of dementia. The family represents an important frame for individual's development and caring. Positive family environment is present when the family is interested in the person with dementia. They are ready to accept the new situation and adapt to it. Everyone inside the family learns and tries to gather the information around dementia. Negative family environment is when the individuals in the family are negative towards the person, they try to get rid of the person, the person is neglected, they do not participate in treatment of the person with dementia. In such cases the treatment outcomes are bad and the family environment is difficult and negative for the person and the outcome of the treatment. In passive family environments relatives do little for the person they care about. They wait for others to take care of them. It is often how it may occur at the start of the disease progression. Later on when the relatives learn about what they can do on their own, they get activated and a positive environment can happen. It is important that we understand when the families are leaning to the negative environment and that we encourage the positive family relations. A diagnosis of dementia can have a huge impact on person's life. This can create a range of emotions when diagnosed with dementia. These emotions may include grief, loss, anger, shock, fear, disbelief and even relief in some circumstances. People may struggle to deal with these emotions and may move between emotions in order to adjust. They may feel afraid over their future, scared about moments of confusion and forgetfulness, and upset about the impact that dementia may have on the people around them. Confirmation of diagnosis may in some circumstances trigger depression and anxiety in some people. It is important that both the people around them feel that they are able to and are encouraged to express their feelings. Those closest to the person with dementia may also have their own emotional reactions to cope with the diagnosis. It is important and that both the person with dementia and those close to them are able to and are encouraged to express their feelings. In some cases, a relief may come from knowing what is wrong, so they may re-evaluate and plan ahead. This experience can be used to re-evaluate the situation and focus on the activities and relationships that make them happy. People with dementia may experience the loss of confidence and they may feel insecure about themselves and their abilities. In many cases people with dementia may feel that they are no longer in control and often don't trust their own judgement. They may experience stigma and social demotion. Especially, since they may not be treated in the same way by people due to their diagnosis. This can lead to have a negative impact on the individual's self-esteem. Nevertheless, this should not be the outcome we strive towards. Some people may in different circumstances form new relationships such as attending a class or a support group. In such cases high-self-esteem allows for individuals to cope much better with chronic health conditions. Start building your care plan and care team with a family meeting. It is important to take action and start with planning short after the signs of dementia became apparent. In this way you can reduce the negative effects of dementia on person's self-perception, relation towards the family and family relations in general. Moreover, the person with dementia can still express his or her will abbot the future. A care team is the group of people who you'll partner with and rely on to provide you help, care, support and connection throughout the course of the disease. Family, friends, neighbours, professionals and your community are all part of your care team. The person with dementia is in the center, but you are not there alone. The help provided by others can minimize stress and feelings of being overwhelmed. Developing a support and care network may help family carers to lead a more productive, active and engaged life. Getting people to help with certain tasks works better with a well-thought-out plan rather than trying to find help in an emergency situation. This plan will provide you - and the people assisting you - with confidence that the assistance you need will be there when you need it. A family meeting is a specific time set aside to promote communication, decision-making, and problem-solving, and to encourage strong family relationships. When caring for someone with dementia, family meetings are important in ensuring information is shared, to put care plans in place, and to help divide tasks among family members. Set realistic and attainable goals for each meeting. Remember, the key objectives to a family meeting are to build consensus among family members and to align with one another for the betterment of a loved one's care. Planning, coordination and follow-up are key to family meeting success. Here are some tips to help things flow smoothly: • Include the person with dementia • Determine all who are, or will, be part of the care team (family, friend, professional) and make sure everyone is included in the meeting • If family members are in different geographical areas, consider having the meeting via phone, video conference, Facetime or Skype. • Set start and end times for the meeting and create an agenda ahead of time; encourage all family members to contribute ideas to the agenda • To help keep meetings on track, limit topics to one or two • Try to hold meetings regularly, and as needed, when there is change in your loved one's condition or care plan • After each meeting, send a summary of decisions and agreements to all participants; be sure to clearly define the responsibilities for each family member • Create a family calendar, including medical appointments and activities, and each individual's responsibilities and commitments • Consider using an outside facilitator, such as a social worker, healthcare professional or other professional to help guide the conversation and ensure everyone is heard. Remember, the person with dementia is in the center, but you are not there alone. We hope that the chapter has been useful to you, and also hoping that these tips can help you cope and get the support you need. If you are interested in obtaining more information, you can consult our project website at: http://demcare.hcilab.es/ . Until the next episode!