September – Dementia month

Living with dementia is a challenging experience; the social prejudice associated with the condition only adds to this challenge, leaving many people with dementia and carers feeling isolated and stigmatised. There are an estimated 413,000 Australians living with dementia, with this figure projected to increase to more than 535,000 by 2025 and 1.1 million by 2056.

Prayer for caregivers
Lord, I pray today for the people who care for men and women with Alzheimer’s disease. You know how hard their work is, how scant their resources, and how heavy their burdens. Perhaps tending to the needs of a stranger, perhaps caring tirelessly for a loved one they have known for years, their hearts are, at times, filled with sorrow and at other times delighted by the glimmers of who once was but is no more. Indeed, the person they care for is slipping away, unable to be what they once were or act as they once did, and this makes the life of the caregiver that much more difficult.
Be close by when these caregivers need your comfort and strength. Fill their hearts with your goodness and solace, and their souls with love. Help them to find ways to rest and take care of themselves. And let them be heartened each day, lifted each day, and loved each day as they love the person who is no longer as they once were, but who is nonetheless your child, worthy of dignity and respect. In the name of Jesus’, Amen
(Source: Maureen Pratt, beliefnet.com)

Prayer for Those With Dementia
Pour your grace, O loving God,
upon all suffering with dementia.
It is frustrating
not to find a word;
it is fearful
to lose one’s memories.
Bless them with patience,
a loving and supporting family,
and days of hope and accomplishment. In Christ’s name we pray, Amen
(Source: adapted, “Prayers of Our Hearts” © 1991 Vienna Cobb Anderson)

A recent study by Alzheimer’s Australia explored community beliefs and attitudes about dementia, and how these impact on the experience of people living with a diagnosis and their carers and loved ones. The online survey, which received 1,457 responses, focused on stigma experienced by people with dementia and their carers, as well as the general public’s attitudes towards people living with dementia. Of the respondents, 44 identified themselves as a person living with dementia; 751 were carers; and 662 were members of the general public. Results indicate that people with dementia are impacted more by stigma than carers, however, both people with dementia and carers reported experiencing strong feelings of social isolation.
Comments from people with dementia reflect the feelings of stigma and social isolation:

 ‘People in the public are embarrassed and uncomfortable around me at times and having been a social person it upsets me that they think I am stupid.’

Having dementia I have lost friends and family members who don’t want to know about the dementia journey…People often talk about me to others and not to me when I am sitting right next to the person.’

Like people with dementia, carers also struggle with feeling disconnected from others:

‘Friends and family do not help in practical ways when needing extra reassurance and company. My husband’s work mates have not kept in contact since his diagnosis.’

My experience was that all the concern was for my late husband. I had no problem with that but I would have liked to be asked how I was doing.’

‘It is such a lonely and isolating condition. My mother’s friends stopped seeing her because she was difficult to engage with. She would often comment she hadn’t heard from them anymore. Heartbreaking.’

Members of the public surveyed, recognised the individuality of people with dementia and are aware that their lives can be improved. However, the statements with the most negative ratings were:

  1. I cannot imagine caring for someone with dementia.
  2. I am not very familiar with dementia.
  3. I feel frustrated because I do not know how to help people with dementia.

These comments suggest that there are a number of people in the general public who are unfamiliar with dementia and feel confronted by this. The overwhelming sentiment from the general public was a need for more education about dementia:

‘I would like to learn more about the things I can do in someone’s company with dementia to make them and their carers more comfortable.’

‘We as the general public need to support families living with this terrible disease. Such a lot of people do not understand and haven’t got the patience around people who struggle every day.’

‘I think we need to continue to educate people about dementia and learn more about how to better care for people with dementia.’

Support is available
If you know someone with dementia or someone caring for a person with dementia, reaching out to them is the first step. Loneliness and isolation is a key concern for people with dementia and their carers. You can help break down social isolation by starting a conversation and letting your friend or family member living with dementia know that they are not alone. It can be as simple as being open and ready to listen.

Alzheimer’s Australia has a range of Help Sheets available:

Tips for Friends

Communication

Language and Communication

Click here for more information or call the National Dementia Helpline on 1800 100 500.

12 steps for caregivers
Although I cannot control the disease process, I need to remember I can control many aspects of how it affects me and my relative. I need to:

  • Take care of myself so that I can continue doing the things that are most important.
  • Simplify my lifestyle so that my time and energy are available for things that are really important at this time.
  • Cultivate the gift of allowing others to help me, because caring for my relative is too big a job to be done by one person.
  • Take one day at a time rather than worry about what may or may not happen in the future.
  • Structure my day, because a consistent schedule makes life easier for me and my relative.
  • Have a sense of humor, because laughter helps to put things in a more positive perspective.
  • Remember that my relative is not being “difficult” on purpose, rather that his/her behavior and emotions are distorted by the illness.
  • Focus on and enjoy what my relative can still do rather than constantly lament over what is gone.
  • Increasingly depend upon other relationships for love and support.
  • Frequently remind myself that I am doing the best that I can at this very moment.
  • Draw upon the Higher Power, which I believe is available to me.
Reprinted from The American Journal of Alzheimer”s Care and Related Disorders & Research, November/December, 1989, 4(6), 38-41.

About admin

Rev Sandy Boyce is a Uniting Church in Australia Minister (Deacon) in placement at Pilgrim Uniting Church, in Adelaide CBD (12 Flinders St). This blog is mainly to resource worship planners for our services, but of course may be useful for others. We have some great writers of music, words for hymns and liturgy at Pilgrim, so this blog also includes their words.
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