Creating a Continuum of Support for Dementia Patients and Their Caregivers
A Community Effort in Cooperation with Cooley Dickinson Hospital
Read a letter from the Founder.
Click here.
MISSION STATEMENT
Dementia and its care deplete the health, hope and energy of patients and caregivers, alike. The mission of the Dementia Initiative is to counteract the debilitating effects of dementia and to increase quality of life for dementia patients and their caregivers, especially within the service area of Cooley Dickinson Hospital.
The goal of The Dementia Initiative is to develop a center of local dementia care. This place -- to which patients, caregivers and practitioners in the Cooley Dickinson service area can come for information, education and referrals -- will do two things:
1) it will function as an "umbrella:" gathering, in one location, information about a panoply of current medical, psychological, social and practical resources and services for dementia patients and their caregivers; and 2) it will facilitate patient and caregiver access to these various resources, creating a continuum of support from diagnosis through bereavement.
Planning for a new care center is only one part of The Dementia Initiative's mission. The other part is education. The goal is educating the community about dementia and facilitating the sharing of dementia information among health care professionals. An important educational medium planned is an e-Newsletter, Making Sense of Dementia, to disseminate information about: the different forms of dementia; patient and caregiver needs and resources, from diagnosis through bereavement; and current treatment theories and practices.
Other media of community education include live Community Conversations, and an Internet presence: www.cooley-dickinson.org/dementia-initiative
The DEMENTIA INITIATIVE – Where We’re At, Today. 1.20.2011
JUST STARTING OUT
The first thing to know about The Dementia Initiative is that our work has just begun. Although we do not yet have in place the panoply of services we envision for the future, we have started offering programs to educate the community about the challenges of living with dementia and of dementia caregiving. Right now, this is a community effort, being carried out in cooperation with Cooley Dickinson Hospital. All the people from the community and associated with the Hospital who are working on this initiative are volunteering their time and efforts to get the work started.
WHAT IS DEMENTIA?
Dementia is a general term, not a specific disease. Dementia refers to a decline in the ability to think, remember, and reason extensive enough to interfere with daily life and activities. The loss affects a significant number of people aged 60–64. Dementia also affects as many as 30 to 50 percent of people older than 85. Early onset dementia can affect people even in their 50s.
OUR FIRST PROJECTS
In preparation for providing more formal community services, the first project of The Dementia Initiative is to develop a comprehensive list of local resources, providers and organizations that presently serve dementia care recipients and their caregivers, and to identify current gaps in these resources and services. This assessment is being carried out by volunteer groups of community professionals in such fields as Social Work; Neuropsychological Diagnostic Testing; Speech and Language, Occupational and Physical Therapies; Dementia Nursing; Case Management; Elder Law Services; Palliative Care; and Hospice and Bereavement Services.
COMMUNITY EDUCATION
The first Community Conversation on Dementia was held on January 11, 2011, to a packed audience at Cooley Dickinson Hospital. The next Community Conversations, planned for spring, 2011, will be on “Dementia Caregiving 101” and a “Dementia Care Fair”, gathering together, in one place, for a brief time, many community resources that serve dementia caregivers and dementia care recipients. As the plans become firm, the dates of those events will be announced on this website and listed on the Cooley Dickinson Calendar of Events. Watch for them!
ACTIVITIES TO IMPROVE QUALITY OF LIFE
In addition, The Dementia Initiative is already convening groups of professionals in the arts and related fields to brainstorm and develop new activities for use by dementia caregivers with dementia care recipients in private homes, adult day care centers, hospitals, palliative care settings and long term care facilities.
Until now, most family and professional caregivers have tended to focus all their efforts on the most basic physiological and security needs of dementia care recipients, because they are so urgent and time consuming. However, by ignoring the care recipient’s concurrent needs for socialization; mastery and self esteem; and emotional and aesthetic satisfactions, typical dementia caregiving has drastically reduced the quality of life of both care recipient and caregiver. As a result, we see a preponderance of frustration, boredom, depression, and isolation in dementia care recipients, and the acting-out behaviors that commonly express these conditions.
At the same time, the typical dementia caregiver’s life becomes reduced to nothing more than providing the care recipient with day-in, day-out, around-the-clock feeding; medicating; transporting; toileting; protection from falling and wandering; and responding to challenging anti-social behavior that is often dangerous. The caregiver soon becomes isolated, overworked, stressed and also burdened by worry about the ever-worsening development of their loved one’s incurable, degenerative disease. Such caregiver burden typically results in the serious health decline of the caregiver, often earlier and to a greater degree than that of the care recipient.
The new activities coming from our brainstorming groups are being designed to introduce into the lives of dementia care recipients – and their caregivers, as well – pleasurable and satisfying social, emotional and aesthetic experiences which meet the full range of human needs as identified by Abraham Maslow in his Hierarchy of Needs. We expect the new activities to be compiled, tested and evaluated in local facilities starting in the coming year.
HELPING US MOVE FORWARD
Currently, providers at Cooley Dickinson Hospital, and other community members, are volunteering their services to The Dementia Initiative to help realize these goals. Cooley Dickinson supports the efforts of The Dementia Initiative because, in the future, these efforts will help to serve the increasing number of people in our area expected to be affected by dementia as the population ages.
READ ABOUT THE DEMENTIA INITIATIVE
The Daily Hampshire Gazette published an article about how the Dementia Initiative got started [“Mindful Mission” 1.11.2011] and an editorial about our work [“When the mind wanders” 1.20.2011]
CHECK BACK HERE, AGAIN
We’ll be adding more resources to this website, as we develop it further. Our work has just begun!