Thanks to Norm McNamara (a person living with dementia and UK Alzheimer’s Society volunteer), for sharing a new document that he and several other people living with dementia and their care partners have developed, in conjunction with the South West Dementia Partnership. It is entitled Involving People Living with Dementia: Making Involvement Count.
Words such as ”involving” and “partnership” are important here, because they challenge us to go beyond the usual way in which we “care for” a person living with dementia.
Although we strive to be “person-centered”, this too often translates into a paternalistic and objectifying approach to life and care. The problem boils down to the tricky nature of empowerment.
A tendency with dementia is to assume that when a person has difficulty making some decisions, then all decisions must be taken away. But the vast majority of people, through all stages of dementia, can participate in decision-making at some level, given adequate communication and facilitation by care partners. Many people living with dementia seem less capable than they are, because we do not take the time to learn and apply the best interpersonal approaches, in order to optimize communication and understanding.
When it comes to creating true empowerment for people living with dementia, people often go to one extreme or the other–either they say, “It is too risky for him to make choices”, or else, “I have tried to have him choose, but he just doesn’t know what to do.” The first extreme cuts a person out due to preconceived biases about his ability to participate; the second fails to provide the proper parameters to enable a framework for successful decision-making.
The South West document goes a long way toward helping create meaningful involvement. It begins with the credo that “People with dementia should be enabled to:
– play a full part in decisions about everyday matters and major decisions affecting their lives;
– participate in the operation and management of services, e.g. by involvement in recruitment
– influence improvements in service operation, e.g. by prompting changes in the way in which referrals are made to specialist services;
– influence future service provision, e.g. by suggesting alternatives to traditional day care;
– have a voice in the policy-making process, e.g. by campaigning for new life-enhancing resources; and
– have a voice in the wider community, e.g. by changing attitudes to dementia through involvement in community groups.”
The brochure contains a variety of guidelines for such involvement, including such things as how to invite people to meetings, ideal room setups, font sizes on printed matter, and facilitator-to-participant ratios. There are sections on communication, inclusion of special populations (such as those living with dementia and learning disabilities), and techniques for increasing participation, both in getting to the event and within the event itself. There is even a section on how to involve people in the process of interviewing new staff for your organization.
This is another great step in helping to create authentic partnerships with people who live with dementia. Click here to download the PDF Involving People Living With Dementia