Standards and commitments. History and memories. Signposting external links. Planning. Sharing useful information and resources.

Transcription

1 Standards and commitments History and memories Dementia Signposting external links Planning Relationships Sharing useful information and resources

2 Page 3 : Introduction Page 9 : Signposting external links Page 4-5 : Relationships Page 10 : Standards and commitments Page 6-7 : Planning Page 11 : History and memories Page 8 : Sharing useful information and resources 2

3 This booklet is designed to help you and your team when working and liaising with the families and friends of the people you support. It suggests lots of things to think about and discuss as a staff team in order to plan and facilitate the best interactions and communication possible with the person you support, their families and loved ones. These suggestions are ideas for you to incorporate in your service where you feel it is appropriate. This is a starting point and you will no doubt develop many more of your own ideas and approaches. 3

4 Dementia affects the person and their loved ones and can have a dramatic impact on relationships. Staff have a responsibility to support the person to maintain their important relationships; it is the team s responsibility to update the person s family and maintain contact and good communication. If the person is suspected to have dementia, consider sharing some information before diagnosis to help prepare families. Always plan ahead - how you are going to inform family and what is the possible impact of information. Discuss in team meetings - how families may respond and explore all possibilities. When giving any information always be sensitive and thoughtful, talking to family, friends etc. about their role in the person s life and discussing different things they can do and anything they would like to do differently. 4

5 Think about the amount and type of contact; was their last call or visit a good or bad experience? Liaise with them to facilitate as many positive experiences as possible. Consider family dynamics, are they naturally proactive or passive? Respect how much families want to be involved and reassure them. Discuss and agree with families their involvement and how this may change. Understand and empathise with different emotional responses from loved ones, i.e. denial, sense of loss, fear. Empower families by discussing what can be achieved if we work together. Ask for families and friends to share information with staff about time they spend with person. Check that information given is understood and record what is said, encourage family involvement in meetings and appointments (especially with a consultant if a diagnosis is expected). Consider the best way to give information; how and when do people like to be contacted, written or verbal? etc. It is important that communication is clear and information is consistent especially early on. Ensure people who want to be informed are always included, so it is a real partnership. Identify family and friends and how to contact them. Use person centred planning tools e.g. the relationship map. 5

6 Create helpful advice on what information to provide for families and when; for example a relevant professionals contact sheet. Make information as accessible to the person as possible using Easy Read pictures and/or films. Keep plans up to date and support the family to contribute, understand and follow the plan. Families may have anxieties about the future. Ensure these are included in Advanced Care Planning i.e. will the person have to move out at some point? What is the longer term view? This may link to an End of Life Plan. Have a Person Centred Review following diagnosis. Involve the person and the family and friends they want present, to get a shared approach with aspirations. What does success look like? Create a checklist of practical things to consider: bank account, tenancy agreements etc. Ensure the family is forewarned about possible discussions. 6

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8 Share Easy Read MacIntyre information such as the What is Dementia booklet with families so that they can use these with the person as well. There are copies on the My MacIntyre Dementia Noticeboard so staff can download the latest versions. Share good stories as well as challenges; general and specific. Share useful practical advice with families. Staff need to receive training on awareness of what to expect as dementia progresses and how this differs with different types of dementia and this information needs to be shared with families. 8

9 Collate and share information that is already available directly or signpost families to it Handouts of useful websites: Dementia UK, Admiral nurses, Alzheimer s Society, talking point forums etc. Links from My MacIntyre Dementia Noticeboard Dementia friends training Beth Britton's blog Support networks local groups Signpost local support available for families Support families to find community links for external support they can access 9

10 Staff commit to working with families to identify and challenge common misconceptions around dementia and follow MacIntyre s approach and values when supporting people regardless of any diagnosis - this should be reflected in staff behaviours. Set out the promises, principles and standards for MacIntyre how does this link in with the practice of supporting a person with a learning disability and dementia? How do the approaches to dementia link with MacIntyre s DNA? March

11 Collect memories and resources for memory boxes and life stories together involve families and friends. Be creative: the person s history can be around them in the décor, in pictures and ornaments etc. Include reference to life story work in the current support plan to enable staff to share in the persons background and memories Consider that although someone may have lost a lot of recent memories some of the most vivid will be from early childhood 11

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