Dementia/Alzheimer’s Congregational Toolkit

UCC Mental Health Network
Congregational Toolkits on Mental Health Challenges


Overview

Dementia is a generic term for a decline in mental ability -- memory, thinking skills, communication skills -- severe enough to interfere with a person’s daily life. Most types of dementia are progressive, meaning symptoms start out slowly and gradually worsen.
There is no cure for most types of dementia and no treatment that slows or stops its progression. Today’s medications may temporarily improve symptoms – but only for a small percentage of afflicted people and then only for a limited time.
Alzheimer's is the most common type of dementia (60-80% of cases), followed by vascular dementia (20-30% of cases), which occurs after a stroke or many small strokes. Most of the information available about Alzheimer’s applies to other types of dementia as well.
Impacts of dementia/Alzheimer’s
The human toll and economic impact of dementia is staggering. A study published in April 2013 shows that nearly 15 percent of people aged 71 or older have dementia – that’s about 3.8 million people. By 2040, that number is expected to balloon to 9.1 million people and by 2050 to 13.2 million. According to the Alzheimer’s Association, more than 50% of people over 85 have Alzheimer’s.
Personal impacts: Dementia robs people of their use of language, reasoning, memory and judgment. People in the early stages of the disease may be frightened, frustrated and angry. In the middle stage, confusion grows and the person may need help with simple tasks like getting dressed. In the latter stages of dementia, a person is bedridden and unresponsive.  
Caregiver impacts: Caring for a person with dementia can be overwhelming -- physically, emotionally and financially. As the disease progresses, the demands of day-to-day care and the stresses of changing family roles can be hard to handle.

Financial impacts: Direct health care expenses for dementia, including nursing home care, were $109 billion in 2010. For heart disease, those costs totaled $102 billion; for cancer, $77 billion.
The value of the sizable amount of informal care for dementia, usually provided by family members at home, ranges from $50 billion to $106 billion, depending on whether economists valued it by the income a family member was giving up or by what a family would have paid for a professional caregiver.

What clergy/staff need to know


Supporting caregivers:

Urge your congregants who are caring for someone with dementia to:
·         Educate themselves -- Become well-informed about the disease. Make a list of local programs that teach families about the various stages of dementia and offer flexible and practical strategies for dealing with difficult caregiving situations.
·         Seek support -- Good coping skills and a strong support network of family and friends also help caregivers handle the stresses of caring for a loved one with dementia. Many caregivers find it helpful to participate in a support group. Support groups allow caregivers to take a break, express concerns, share experiences, get tips, and receive emotional comfort. To find a support group in your area, go to www.alz.org
·         Take time off – Keep a list of activities that rejuvenate and refresh you and make time to do them regularly.

Supporting people with dementia:
  • Visit those who are living with dementia and their loved ones. Isolation is one of the sad realities of experiencing dementia.
  • Offer spiritual care. No matter what stage of dementia a person is in, praying with them and assuring them of God’s love for them is appropriate.
  • For people with advanced dementia, touch is a valuable way to communicate. Even if it is just for a few minutes, a caring, comforting touch can bring profound change.  The nonverbal communication offered through touch allows both giver and receiver to feel deep and lasting connection.

How your congregation can help

      
       Group activity ideas
·         Present a 1-hour Adult Forum class to educate your congregation about dementia. Or even better, offer a series of adult forums on the impact of dementia on the person who is experiencing it, the loved ones who are touched by it, and the system of care that is either available or not present at this time.
·         Organize a hymn singing event for people with dementia and their caregivers. Many people with advanced dementia respond well to music, even when they are beyond being able to respond to the spoken word.
·         Include an article about dementia/caregivers in your congregation’s newsletter.
·         If there is no Alzheimer’s Association support group in your area, start a support group for caregivers.
·         Set up a team to regularly visit those are living with dementia and their loved ones to bring relief to their isolation.
·         Create and distribute a list of the local resources and support groups for persons with Alzheimer’s and their families. 

       Tips for individuals
·         Be careful in your use of language. Do not say, “he is losing his mind,” or “she is out of it.” Dementia is a brain disease. You could say “he is living with dementia, a brain illness,” or “she is living with diminished mental capabilities.”
·         Be willing to be an advocate for those who are affected by dementia. Make a point of understanding the complexities of health care services and advocate for better services in your state.
·         Read as much as you can about dementia and Alzheimer’s at Alz.org. 

      Handouts
·         Alzheimer’s Disease Fact sheet from the  Alzheimer’s Disease Education & Referral (ADEAR) Center
·         Caregiver Tip Sheets from the National Institute on Aging
               

Where to find local resources
Alzheimer’s Association
Phone: 1-800-272-3900
The Alzheimer’s Association offers information, a help line, and support services to people with AD and their caregivers. Local chapters across the country offer support groups, including many that help with early-stage AD. Call or go online to find out where to get help in your area.

Annotated resource list


General resources
1.       For people caring for someone with dementia: http://www.alzheimers.gov/
A good place to get your questions answered. Find out what Medicare pays for and what it doesn’t. Learn where to go for help. Explore treatment options.  And much more.
2.       Booklet: Caring for a Person with Alzheimer’s Disease from the National Institute on Aging.
3.       Alzheimer’s Disease Education and Referral (ADEAR) Center
Phone: 1-800-438-4380
The ADEAR Center offers information on diagnosis, treatment, patient care, caregiver needs, long-term care, and research and clinical trials related to AD. Staff can refer you to local and national resources, or you can search for information on the website. The Center is a service of the National Institute on Aging, part of the National Institutes of Health.

4.       Alzheimer’s Association
Phone: 1-800-272-3900
The Alzheimer’s Association offers information, a help line, and support services to people with AD and their caregivers. Local chapters across the country offer support groups, including many that help with early-stage AD. Call or go online to find out where to get help in your area.

5.       National Family Caregivers Association
The NFCA supports family caregivers and speaks out publicly for caregivers’ needs. The NFCA encourages self-advocacy and self-care and believes that caregivers who take charge of their lives, and see caregiving as just one of its facets, are likely to be happier and healthier.

Resources on dementia and spirituality
1.       Spirituality and Dementia” – a comprehensive listing of books, articles, videos and websites about spirituality and dementia, compiled in 2011. While a few of the links in this document no longer work, it is still a valuable resource.  Includes sections on clinical care, family care, pastoral care and diversity. Published by the Alzheimer’s Association.

Share your experience: What worked? What didn’t?