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Jeanette Maitland, National Dementia Carers Action Network. presentation from Alzheimer Scotland's Dementia Awareness Week Conference June 2012.
How do we create effective care partnerships with families, partners and friends who care for people with dementia?
We as carers of people with dementia need to be included and involved in decision making; not viewed as opposition, but thought of as allies – wishing to share information gathered from the ‘coal face’ through years of observation and experience.
We have been blessed with 2 ears and one mouth therefore, we must learn to
• LISTEN TWICE AS MUCH AS WE SPEAK
• There is no I in TEAM
• Put aside personal or professional pride and consider ideas and suggestions which may enhance the life or quality of care for someone with dementia. After all this is what we are striving for.
Families, partners and friends are the main stay of care and support for people with dementia, but we need support to continue in our caring roles, we need to be seen as equal partners, listened to, allowed to participate in decisions, given opportunities to have flexible and personalised respite and have our own health and wellbeing considered. We need to be seen as equal partners regardless of the care setting. Too often our role as a partner in care is dismissed, particularly when the person we care for is admitted to hospital or a care home. Providing appropriate support, which tackles the symptoms of dementia to people with dementia throughout every stage of the illness can help people with dementia continue to live well at home. Equally providing appropriate support to those who care for people with dementia can help prevent or delay expensive and unnecessary crisis interventions such as admission to hospital or a move to a care home.
You will all be familiar with the old adage: A chain is only as strong as its weakest link. This can also be said of our Dementia Care Services.
Think of each stakeholder as a link in a chain. Each link adds to the strength of the chain. It includes people with dementia, National and Local Government, health and social care professionals, commissioners of services, service providers from all sectors, housing, local communities, health and social care education and scrutiny bodies. Families, partners and friends who care for someone with dementia are an equally important link on the chain. Together we can face the challenges of dementia, together the chain is strong. But if one link is missing or weak!