My name is Ruth Gardner. I am an Occupational Therapist who works with people and their families who have been newly diagnosed with dementia in Forth Valley. I run a post diagnostic group for newly diagnosed people with dementia and carers with Alzheimer Scotland and the local Carers Centre. People who attend the group tell me that receiving a diagnosis of dementia can be really frightening and shocking. They tell me about the stigma that surrounds the diagnosis and the unhelpful reactions friends and family can often have to their news. They worry about losing control and being a burden on their families. So sustaining hope in these circumstances can be a complex challenge.
What is hope?
The Oxford English Dictionary defines hope as:
“Grounds for believing that something good may happen”
It is having something good to look forward to, feeling positive and in control of our lives.
What Occupational Therapy can offer at this time is assisting the person and the family to look at skills and attitudes that can assist them in having a meaningful future despite their illness, in essence to live well with dementia. Sounds simple enough but how do we do it?
10 ideas to facilitating Hope
- Reassuring the person and the family that you and other members of the team are there for them throughout their illness and helping the person and their family understand the illness, identifying areas where control can be nurtured such as power of attorney and advanced care planning.
- Outline what treatment is available to help manage any symptoms such as medication, cognitive stimulation therapy and compensatory strategies to manage memory loss such as telecare.
- Peer support, meeting with others who are going through the same thing is a powerful tool and shouldn’t be underestimated. It gives opportunities for people to share their stories, and share ideas about how to manage the condition. They can be a constant source of encouragement.
- Providing information and support for the carer. Families report that this gives them more confidence to deal with issues that arise and helps prepare them for the future. Also people with dementia have commented that it increased their trust in the carer’s ability to help them should things change
- Discuss and share ways of coping day to day. This can include things such as simplifying tasks or breaking them down into smaller steps to make them easier. Other strategies can include using calendars or diaries to remember appointments, using a timer or mobile phone to set audible alarms to remember to do something such as take your medication
- Humour. Time after time I see people trying to see the humour in a situation. It can defuse tension. Also laughter releases feel good hormones
- Try relaxation techniques such as breathing exercises, massage or even just sitting quietly listening to music you enjoy
- Stay involved in life. People often speak about how they have to adjust their expectations of the future and sometimes mourn the life that they may now not have. However through the group and individual session staff can help explore and discuss with the person with dementia and their families realistic new goals and expectations and rethink their outlook.
- Look after your mental health. If you experience anxiety or depression due to your diagnosis we encourage people to discuss this with their doctor or other health professionals such as Community Psychiatric Nurse
- Focus on your strengths. If we focus on developing and using more of our strengths it will help us to get the best from ourselves and feel happier; good enough is usually good enough.
I would love to hear your comments on my blog or for you to consider “when you integrate hope into your work what kind of things happen for you and for the person with dementia, their carer, partners and families?”
A book and weblink I have found useful on integrating ideas of hope in my work as an occupational therapist:
Lisa Snyder (2010) Living Your Best with Early Stage Alzheimer’s. Sunrise River Press
Team Lead Occupational Therapist, NHS Forthvalley
I work as an Occupational Therapy Team Lead in a Community Mental Health Team for Older Adults within the Falkirk area. As part of my role I work with people who have newly been diagnosed with dementia and their families. I work closely with my Alzheimer Scotland colleagues and do a joint post diagnostic and singing groups with them. I am also involved in dementia training for Allied Health Professional’s in NHS Forth Valley