Resources to support you

There are a broad range of resources which you might find helpful in finding support which suits you. You might like to think of this as a ‘toolkit’, which you can try out and mix and match to help you feel supported. This includes places you may go for face to face support or online resources such as links to websites for guidance, advice and information.

The Dementia Guide, available from your GP and online from the Alzheimer’s Society may be a useful starting point. The guide explains living as well as possible with dementia, and about making plans for the future. This may help you to better understand dementia and available treatments, support and services.

Dementia cafes may be a helpful way of meeting with other people who are caring for someone with dementia, and meeting other people with dementia. Dementia cafes are a way of informally sharing experiences, hints, tips and advice with others who may have similar experiences or circumstances. Sometimes healthcare professionals attend too, which may be a useful way of seeking advice or discussing concerns.

Online forums and communities, may help you to share your concerns confidentially and seek advice and support from others in similar situations. One example is Talking Point, run by the Alzheimer’s Society. This might be general discussion or there may be different ‘rooms’ or ‘threads’ you can join around specific issues. To keep yourself safe online, make sure you are familiar with the rules and find out whether anyone is monitoring these sites.

There are a number of organisations who provide online resources and information, such as fact sheets, booklets, self-help guides, videos and documentation to help you to navigate your way through understanding dementia, how to take care of yourself and how to plan for the future and document wishes. Many countries have national organisations which provide these resources. We have included some examples from the UK and Ireland below:

Alzheimer’s Society: provides a range of resources including fact sheets on Lasting Power of Attorney, Planning ahead; Living well with dementia, End of life care; videos; and booklets including This is Me

NHS Dementia Guide: offers general information on symptoms, diagnosis, care and support

Dementia UK: gives information and advice on dementia and how carers can access support

Social Care Institute for Excellence (SCIE): includes a specific section on advanced dementia and end of life care. There are a range of resources such as e-learning courses and videos

The Irish Hospice Foundation: includes a range of guidance documents, booklets and resources to support advanced dementia and end of life care

St Christopher’s Hospice: A free downloadable leaflet about caring for someone with advanced dementia

Dying Matters: provides leaflets and other resources which raise awareness about planning for end of life. There is also a search facility to help you to find local resources, as well as a resource to help you talk about death and dying

Carers UK: provide a range of fact sheets, guides and advice to support carers around relationships, financial matters, work, technology and health and wellbeing. They also have an online forum so carers can support each other

There may also be local organisations offering face to face, telephone or online support which your GP, admiral nurse, dementia adviser or social worker may be able to recommend.

Have you found particular sources of support you can share in the comments?

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This article is from the free online course:

Dementia Care: Living Well as Dementia Progresses

Newcastle University