Last week we had the privilege and pleasure of a supporter of DAI, and friend of our members, senior psychologist Denise Craig from Cairns in Queensland. To introduce the presentation, Denise said:
When my mother was diagnosed with Alzheimer’s and Vascular dementia at the age of 65, dementia became my working life’s vocation. I was fortunate enough to achieve a position where I could assist people diagnosed with dementia, and those providing care and support, both through face to face assistance and also ‘bigger picture’ systemic strategies.
In 2012 as a private undertaking I established a Facebook page. Via posts and private messages I have had the opportunity to hear from many people with rich and diverse stories to tell. Through social media I noticed a pattern of criticism of health professionals, namely that there is little help after diagnosis.
People diagnosed with dementia, care partners, family & friends, can find it hard to come to terms with a dementia diagnosis. Bearing in mind that no two people will have identical experiences, generally speaking dementia is an illness for which support is imperative.
Support includes both early intervention & ongoing assistance to adjust to changes, develop coping strategies, maintain maximal independence & improve quality of life. Holistic assistance which encourages people to live to their personal potential is the cornerstone of good care. By adopting an enabling approach focused on preferred occupation & meaningful activity, independence & well-being, people diagnosed with dementia & their significant others have an opportunity to live to their post-diagnosis potential.
Twelve months ago whilst meeting Kate Swaffer in Melbourne, we shared a robust conversation about rehabilitative/enablement opportunities. I committed to the construction of a ‘Dementia Enablement Guide’ to assist GPs to discuss options which consumers might find helpful.
Through my role within the Qld Statewide Dementia Clinical Network I established a multidisciplinary group which completed this project. A group of people living with dementia, care partners, clinicians and academics reviewed the document and provided valuable feedback. The tool is being trialled in Cairns and Kiama, NSW (as a part of their DFC project), and a consumer version is nearing completion.
The Dementia Enablement Guide is freely available via Qld Health’s website at https://www.health.qld.gov.au/cairns_hinterland/docs/gp-dementia-enablement-guide.pdf
With permission, for Day 15 of Dementia Awareness Month 2015#DAM2015, we are posting an article first shared on the Young Onset Dementia Support Group Facebook Group, run by psychologist Denise Craig. It was written by a speech pathologist,
Anne Kavanagh is an experienced speech language pathologist working with people with various neurological conditions in the Cairns community, including people with progressive conditions such as Parkinson’s Disease, Motor Neurone Disease, Dementias, and people with acquired neurological conditions such as stroke and brain injury.
“What do I need the Speechie For?
You’re sitting in your doctor’s room and she’s told you she wants to refer you to a Speechie! “Why?” you ask, “I can talk just fine!”
A Speechie is a Speech Language Pathologist, an allied health professional whose university training includes how to assess the way people use language to let others know what they’re thinking and to understand what people are saying. Writing and speaking aloud our thoughts, thinking about and planning for the future, is what separates us from our animal coinhabitants.
Our communication is what humanises us, and large portions of our brain are devoted to it.
When you think about it it’s pretty obvious that we need to have a store of words and their meanings in our memory. We begin to build that store, our vocabulary, in early childhood and we continue to expand it throughout our lives.
Speech itself is a complicated muscle activity, so to say our words aloud we also need to have a programme of sound patterns stored within our brain to produce each sound we make (ie. how and where to move our tongue, and our lips, to shape the breath vibrating through our vocal cords into sounds). Then we have to sequence all those sounds together into a word. Next we need to string together words into sentences, according to the grammar rules of our language, so that people around us can understand what we’re trying to tell them. While all this is going on, inside our minds we are formulating the next idea to convey, and it all happens in milliseconds! When Dementia hits there will be a point in time when any, or even all, of the brain functions that are involved in your ability to tell people what you are thinking, and understand what they are saying, will be affected.
Not all Dementias are the same so for one person their ability to put together their thoughts well enough to express their ideas may be affected, while for another they may not recognise or remember the name of objects or people with whom they are familiar but can still carry on a conversation using “small talk”.
So when your doctors tells you they think it’s a good idea to see a Speech Language Pathologist, they are recommending an assessment of your speech and language skills to determine what part of your communications are affected, and what can be done to help you manage it. Your doctor may have noticed some or all of the following:
• Difficulty comprehending spoken or written language, particularly single words
• Difficulty comprehending word meanings
• Difficulty naming objects
• Difficulty retrieving correct words in speech
• Frequent pauses in your speech while searching for words
• Slow speech
• Difficulty repeating phrases or sentences
• Difficulty speaking
• Hesitant, halting speech
• Making errors in speech sounds
• Difficulty understanding sentences
• Using grammar incorrectly
When a Speech Language Pathologist determines which parts of your communication skills are working well and which are not, you may then be prescribed some activities or strategies that could help you maintain, improve or manage within your abilities.
Some ideas are:
• Use your writing skills to record information. For example appointments in a diary; keep a journal of an event or activity that you can then share with your partner, children, family or friends; prepare your questions for your doctor ahead of your appointment.
• If your visual skills are stronger than writing then keep photo journals. In these techno times use the tools available to your advantage, like the camera on your phone to “snap” a scene that will help you recall and then communicate an experience. If you can’t work the camera then ask for help…most “youngies” would know how to work it!
• Perhaps your auditory skills are stronger so record spoken information and listen back. Another advantage of our techno times is easy access to recording apps. Be diligent with labelling your recordings to help you find the stored information you need. Get help if that labelling is difficult for you.
• Stimulate your vocabulary any way you can by using written, picture, photo or auditory exercises to help you recall the items, events and people you want to. Practice speaking those words and phrases.
• Talking about the meaning of a word can help if you can’t recall the actual word as sometimes it’s easier to give the clues and let others provide the name if it helps a conversation continue.
• Make a list of all your medications, including vitamins and supplements. Photograph them if you need to and make up a visual schedule to help you remember when to take them, or to help you fill your medication dosette.
• Take a family member or friend along to help you communicate if you feel you need them.
• Ask for important information to be written down, and take brochures if they are available.
Losing the ability to communicate is distressing and incredibly frustrating. Friends and family members can make communication easier by:
• Paying close attention to you and your gestures and facial expressions
• Giving you feedback about the need for clarification
• Providing you with more time for communication
• Confirming information with you
• Keeping their statements relatively brief
• Offering reduced numbers of choices per statement so you can consider them one at a time
• Supplementing their speech with gestures
If you have children and are concerned about your communications with them then try to:
• Find activities you can enjoy together.
• Stay engaged and talk with your children honestly about what you’re experiencing.
• Make your child’s school counsellor and/or social worker aware of your condition and problems with communication. Let them know the best way to provide you with information.
• Keep a written, video or audio record of your thoughts, feelings and experiences for your children. They’ll appreciate your sharing your wisdom and memories.
Speech Language Pathologists are important members of the team of professionals who are there to help you understand and manage the many challenges of dementia and communication.
You know that annoying problem you may be having with drinks seeming to go down the wrong way, making you cough, splutter and get watery eyes? Well Speech Language Pathologists also specialise in swallowing problems, but that topic will have to wait until the next blog”.
Our sincere thanks to Denise and Anne for their permission to share this information here with our members, and to Anne for generously sharing her wisdom.