How to include people with dementia in the activities of Alzheimer associations http://www.alz.co.uk

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This factsheet is intended as a guide for staff and volunteers of Alzheimer associations as to how they can work towards
being inclusive of people with dementia. It was developed by Alzheimer’s Disease International (ADI) in consultation with
ADI members and people with dementia.

Published in: Health & Medicine
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How to include people with dementia in the activities of Alzheimer associations http://www.alz.co.uk

  1. 1. April 2003How to include people with dementia inthe activities of Alzheimer associationsThis factsheet is intended as a guide for staff and volunteers of Alzheimer associations as to how they can work towardsbeing inclusive of people with dementia. It was developed by Alzheimer’s Disease International (ADI) in consultation withADI members and people with dementia.Why include people with Factsheets, booklets, videos and associations at the end of thisdementia? websites may all be useful ways of factsheet. providing information. Consult andIncreasing awareness about dementia involve people with dementia in the 4 Educational programmes – manyand the development of treatments has development of information materials Alzheimer associations provideled to earlier diagnosis. As a result, for them. Remember that people with educational programmes such aspeople with dementia are contacting dementia are not all the same. Those seminars, workshops and courses forAlzheimer associations asking to be affected at an early time in their life will carers. Consider organising sessionsincluded because there is a better have different needs to older people. for people with dementia either on theirunderstanding of their needs as Also think about how information is own or with their carers. Relevantexpressed directly by them. presented, such as the font type and topics may include: It is important to acknowledge that size.people with dementia have abilities that • How a diagnosis is madeneed maximising so they can remain 2 Support groups – like carers, • The different causes of dementiaactive participants in life. People with people with dementia may need and their effect on behaviourdementia can contribute their direct someone to turn to for support or justexperiences to the development of • How to plan for the future – using to talk. Other people with dementia areprogrammes and services and help powers of attorney, making wills, the only people who know first handAlzheimer associations develop a living wills what a person with dementia isgreater understanding about the experiencing. Setting up support • Coping with a diagnosisexperience of living with dementia. This groups for people with dementia is ancan help reduce stigma, inequality and • How to simplify and organise your important way of providing support butdiscrimination and enable a person home and life does require careful planning andwith dementia to feel valued and groups should be led by supervised, • Support from new technologyincluded. trained facilitators. This factsheet will look at howAlzheimer associations can support Involving people with 3 Link to other resources – otherpeople with dementia and involve them dementia in Alzheimer organisations in your country mayin their activities. associations’ activities provide support for people with dementia, such as those concerned If you are working towards beingSome ways of supporting with mental health generally or the inclusive of people with dementia thenpeople with dementia welfare of older people. There may you should involve people with already be support or advocacy groups dementia throughout your organisationIt is essential to ask people with available. It is important to find out in meaningful positions, not justdementia exactly what it is that they what support other organisations are ‘figurehead’ ones. This is a complexwant and need before considering providing so that you can refer people process and to avoid tokenism, onesetting up any of the following services. with dementia to them. that must be carefully thought through Dementia Advocacy and Support and supported by your board members1 Providing Information – Network International (DASNI) is a and staff. The term ‘involvement’specifically for people with dementia on network of people with dementia describes the whole range of practicaltopics such as: throughout the world who support ways in which the views and• What is dementia? each other mainly via online chat rooms preferences of people with dementia• Treatment and email. For more information visit their can be sought and their influence• Support and resources available website at www.dasninternational.org brought to bear on your association’s• Practical tips for coping Please also see the list of other online activities.• Planning for the future resources provided by Alzheimer
  2. 2. ALZHEIMER’S DISEASE INTERNATIONAL APRIL 2003 2Suggested ways you can involve Loss of competence – This is assume that you can act or speak onpeople with dementia: probably the most difficult and sensitive their behalf. aspect of involving people with It is the right of people with• Appoint a person with dementia to dementia, that is what happens when dementia to be involved in the the board or executive committee the person with dementia is no longer organisation that represents their• Appoint a ‘person with dementia able to perform a role in your interests. Involving people with advocate’ either as a member of association, be it as a member of your dementia is a new direction for many staff or volunteer, with the sole board or part of a consultation group. that with careful planning and support responsibility of identifying and The starting point is to talk about it and can only help to improve the addressing the needs of people with work towards reaching a solution effectiveness of Alzheimer associations dementia together. It is important not to deny in achieving their fundamental goal of that someone is no longer capable of supporting people with dementia and• Hold regular ‘people with dementia fulfilling their role, as the work they are their families. consultation groups’ and surveys on responsible for will not get done. This If you need any further advice or services/programmes provided to may affect the mission and credibility of information please contact ADI. determine whether their needs are your association. However, it is being met and if not, assess how important to remember that just programmes/services could be Useful resources because a person is not able to fulfil a improved Books/booklets particular role, this does not mean that Alzheimer Society of Canada. (n.d.). First steps: For• Advocacy – invite people with they are no longer able to contribute in those recently diagnosed with Alzheimer’s disease. dementia to share their experiences other ways. 10 pages. to help develop policy Alzheimer’s Society UK. (2001). I’m Told I Have Perceptions of time – People with• Programme development – consult Dementia - What you can do. Who you can turn to. 25 dementia only have a limited time to pages. people with dementia when contribute so it is important that developing new services and Yale, R. (1995). Developing Support Groups for everyone understands this. A small Individuals with Early Stage Alzheimer’s Disease. information delay on an agreed deadline may not Health Professions Press. 230 pages.• Include the perspective of a person matter to people without dementia but with dementia in your awareness may be significant to someone with Factsheets Factsheets for people with dementia have been campaigns dementia who may have different produced by Alzheimer’s Australia and can be priorities. Agreeing realistic time downloaded from their website,• Invite people with dementia to speak expectations can help. www.alzheimers.org.au at appropriate events and conferences Websites Ground rules – Ask people with The following websites include sections for people dementia whether there are any ways with dementiaSome important issues to meetings could be made easier for Alzheimer Society of Canada: www.alzheimer.cathink about them e.g. breaks, presentation of Alzheimer’s Association USA: www.alz.org written material, lighting, sound levels. Alzheimer’s Australia: www.alzheimers.org.auEncouraging a commitment to Alzheimer’s Disease International: www.alz.co.ukinvolving people with dementia – Alzheimer’s Society UK: www.alzheimers.org.uk Acknowledging contribution – WhenSupport and encouragement cannot DASNI: www.dasninternational.org a person with dementia is no longercome from one individual on their own. able to perform his or her role, it isInvolve everyone in the planning and in important for the rest of theworking towards the same goals. You board/group to acknowledge andmay want to consider organising a celebrate the contribution thatworkshop for members of your individual made. However, it isassociation about involving people with important to recognise the efforts thatdementia. people have made throughout, not just when they no longer can.Sensitivity and understanding –People with dementia may needadditional support to contribute their Conclusionperspectives. For example, more time This factsheet is intended as a guide toto express themselves at meetings. help you work towards being moreYou may also need to allocate funds to inclusive of people with dementia andprovide private transport to attend to highlight some of the issues youmeetings. need to think about. For more information contact: The fundamental principle to Alzheimer’s Disease InternationalSupporter – People with dementia 64 Great Suffolk Street remember when involving people withmay like to invite a friend or supporter London SE1 0BL dementia is to ask them for their views Tel: +44 (0)20 7981 0880to help them in meetings and facilitate and listen to what they say. Do not Fax: +44 (0)20 7928 2357their contributions. Email: info@alz.co.uk Web: www.alz.co.uk

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