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Human rights and personal resources
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| Human rights and the convention for rights of persons with disabilities |
(a) Recognize dementia as an impairment under the CRPD |
| (b) Support a human rights approach to self-determination when a person with ID is affected by dementia |
| (c) Support increased dialogue and cooperation between ID services and the dementia advocacy and care sectors |
| Perspectives of persons with intellectual disability |
(a) Undertake more research on care determination situations |
| (b) Enable greater involvement of self-advocacy groups in dialogues with providers |
| (c) Increase efforts on breaking down bias by research and ethics review boards on using persons with ID as informants |
|
Individualized services and clinical supports
|
| Post-diagnostic support |
(a) Study the effectiveness of different non-pharmacological interventions |
| (b) Develop guidelines for PDS applications by caregivers and support staff |
| (c) Research the prevalence and nature of BPSD in adults with ID who develop dementia |
| Community dementia capable supports |
(a) Develop standards of care for community-based services that provide housing and other supports for persons with ID and dementia |
| (b) Promote dementia capable living environments in all places called 'home' |
| (c) Prevent arbitrary changes in residence via fiat by government authorities |
| Advanced dementia |
(a) Support continued assessment for changes in disease progression |
| (b) Encourage research directed at identifying more sensitive clinical tools for recognizing progression to late stage or advanced dementia |
| (c) Develop training in, and practice guidelines for, care practices with advanced dementia |
| End-of-life care |
(a) Create a universal practice guideline on end-of-life supports |
| (b) Encourage the use of such supports for end-of-life care in home settings |
| (c) Recognize variations in what 'home' may be like with respect to end-of-life care |
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Advocacy, public impact, and family caregiver issues
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| Terminology and the use of language |
(a) Adopt a standardized list of terms for general use by providers and researchers |
| (b) Standardize reporting to include key demographic and subject factors |
| (c) Promote positive imagery via non-stigmatizing language |
| Inclusion in national dementia plans and strategies |
(a) Include adults with ID in processes that create national plans |
| (b) Advocate that governments provide supportive data related to ID for plan development |
| (c) Involve 'self-advocates' [persons with ID] in the development or review of policy documents and plans |
| Family caregivers |
(a) Increase family support and enhance access to information and assistance with respect to family's values, beliefs, ethnicity, and circumstances |
| (b) Aid in ageing planning so that families are aware of steps to make appropriate decisions according to their own values and, if possible, valuing person with ID's opinion |
| (c) Reduce stress and provide resources to avoid and minimize the negative aspects of caregiving |
