Getting told that you or a loved one has dementia can be overwhelming, let alone thinking about the road ahead and what life might look like from now on.
I remember going to a talk by dementia GURU and the amazing Dr Faizal Ibrahim, Consultant Geriatrician several years ago and his words still stick out to me today... "Let's make dementia sexy!!" Now, this is by no means meant to minimise the distress and feelings of overwhelm that you may experience before/after diagnosis, but rather, it's a way to look at dementia as something to not be afraid of. Because when we are afraid or fear something, we try and avoid it right? Our brain naturally goes into survival mode and we RUN as fast as we can (so to speak)!
If you read my previous post, you will know that the rate of dementia is growing and it is likely that you or someone you know has been affected by dementia in some way. Whilst there is no cure yet, there are MANY things that we can do to make life easier and support you with your dementia journey.
Occupational therapists (OTs) are concerned with how people function, meaning what can they do and what can't they do... and what they wan't to do but can't because of a certain road block (AKA dementia). Dementia can affect many aspects of a persons daily life (not just their memory); after all, their brain is not working like it used to. If our brain, the control room of our body, is no longer as efficient, we are going to have glitches in the system whereby we don't do things the way we used to because that part of our brain (or control room) no longer works.
We might find people no longer being able to dress themselves, they may try and put pants on over their head, they might get confused with money or have difficulty paying bills, they may put a tea bag AND coffee in the same cup, they may get lost in Coles or Woolworths, they may put their slippers in the fridge or try and clean their teeth with a hairbrush. The CONTROL ROOM is not working properly and the part of the brain that used to say right "that is a hairbrush to brush your hair and that is a toothbrush to brush your teeth" is NOT WORKING. Now many people with dementia will not experience these things but other difficulties - everyone is different, a persons experience of dementia is unique to them.
So what do we do to help.. that is the burning question!
Well, a thorough assessment is always important. As an OT, I will look at what it is that the carer or person with dementia is concerned with... Why are they looking for support in the first place? This is different for everyone and it will depend on what supports the person already has and well, a range of things really!
I will look at a persons current functioning; how their brain is functioning (a cognitive screening assessment) and how their body is functioning. What can they do? What can't they do? What do THEY WANT TO DO? What do they NEED to do? I will look at their interests and roles and what they find meaningful. For many people with dementia, it is often thought that they lose interest in what they once enjoyed, which can be the case due to many potential reasons like apathy and depression, however, this is still so important to consider as it can help us to better connect with the person with dementia and assist with improving their future care and quality of life. I will also look at the persons environment (physical and social) - where do they live, what environmental barriers are there stopping them from doing what they want and need to do, do they have supports in place (either formal or other supports), is it easy to locate items in their home or do they lose things, how do they get around?
As OTs, we look at the person, their environment and the tasks they need and want to do. From there, we work with the person and their supports/carers to develop strategies that aim to help the person be able to do the things that they want and need to do and improve their quality of life.
Things we as OTs might recommend may include:
ADAPT ENVIRONMENT (Examples):
- Apply labels to cupboards to make it easier for the person to find things
- Recommend GPS trackers so that the carer can have peace of mind should the person get lost (a GPS tracker tracks their location).
- Remove clutter on benches and around the home
- Reduce noise as noise can be an unnecessary and confusing stimulus (like installing acoustic tiles or curtains)
- Reduce glare and risk of falling (40% of people with Alzheimer's have vision loss, Hammond Centre, 2015).
- Provide advice to carers/family on how to communicate with someone with dementia
- Working with carers to find ways to reduce the persons agitation and distress (changes in their personality)
- Only having winter clothes in the wardrobe in winter so that the person with dementia does not get confused and wear pants and jumpers in 40degree heat
- Have the persons outfit laying on the bed so that when they get out of the shower, you take away the sometimes confusing task of having to "choose" what to wear (this can be VERY overwhelming)
ADAPT TASKS (Examples):
- Breakdown the task (e.g. have all of the ingredients out on the bench prior to cooking to reduce confusion when trying to find it all in the cupboards)
- Buy frozen/pre-packed meals instead of having to cook
- Get a gardener once a fortnight to do the big jobs (mowing, pruning), and still support the person with dementia to do the smaller jobs like weeding, watering, planting seeds.
- Have a carer support with the complex aspects of tasks like showering (ensuring that they are not taking away independence and only doing "with" and not totally "for" the person)
- Organising direct debit bill paying, rather than having to do it at the post-office or by cash
- Medication reminders and webster packs
SUPPORT PERSON (Examples):
- Linking them with a community support service (like Dementia Australia link worker, help at home services, groups, GPs/specialists, social workers)
- Introducing them to a social group where they can meet others and have fun in a safe way
- Provide counselling support
- Giving them simple strategies to manage stress/anxiety (and providing them with reminders if short-term memory is a difficulty)
- Giving advice on a healthy lifestyle choices as a preventative strategy
- Using meaningful MUSIC as a way to help calm them and manage their mood/emotions
AND THEY ARE JUST A FEW!! YES - There are many more ways that we can help but as I said, the dementia experience is unique to every individual and a thorough OT assessment is recommended to develop a tailored plan with the person/their carer to work out ways to help!
So.... it is time to WRAP things up and touch on local supports here in Port Lincoln and on the Eyre Peninsula.
Firstly, I would like to mention that I am offering you a FREE "discovery call", whereby we will chat over the phone and you can discuss with me some of your concerns. I will then provide you with some strategies in moving forward and we can team up to work out 'where to next' in your dementia journey! Please contact me on 0488 257 861 and we can schedule a time!
Other places to go for support:
- Your local GP
- Dementia Australia Link Worker (referral through My Aged Care - Phone: 1800 200 422)
- My Aged Care - Phone: 1800 200 422
- Carers SA (1/18 King Street Port Lincoln - Phone: 8683 4477)
- Uniting Communities (41 Edinburgh Street Port Lincoln - 1800 615 677)
I hope this information helps you with your dementia journey and I want to sincerely thank you for reading.
Until next time, Brooke :)
Occupational Therapist, Holistic Occupational Therapy
Image 1 source: uq.edu.au
Many people know that dementia is related to the brain and the way it functions. Often, people associate dementia with loss of memory - but it doesn't JUST affect memory.
Dementia is a "syndrome", which means that it is an umbrella term used to describe a cluster of symptoms that are caused by a range of conditions. Contrary to popular belief, dementia is not one specific disease. In fact, there are over 100 "causes" of dementia with the most common being alzheimer's disease followed by vasular dementia and dementia with Lewy bodies (Dementia Australia, 2018).
Dementia IS NOT a normal part of ageing, although most people who are diagnosed with dementia are older (over 65). In saying this, people in their 40s and 50s can also get dementia, and you may be familiar with the term 'younger onset dementia.' In Australia, approximately 250 new cases of dementia are diagnosed each day and by 2056 that number is expected to rise to 650 each day. Currently, there are approximately 436,366 people living with dementia in Australia and without a medical breakthrough that number is expected to rise to approximately 1 million by the year 2050 (Dementia Australia, 2018). These estimates are staggering and indicate the ongoing need for health services to provide support to people living with dementia and their loved ones.
Each form of dementia affects the brain differently; however it is common to see dementia affecting a persons overall behaviour, thinking and ability to perform every day tasks - not JUST their memory! Dementia affects someone's brain function enough to impact their normal social or working life.
Sometimes a person can experience dementia like symptoms (confusion, personality changes, agitation, short-term memory deficit, difficulty with recall and concentration) which can be caused by conditions such as depression, delerium and other medical concerns. Therefore, it is important the person be reviewed by a GP or medical specialist to rule out and treat other potential causes.
Symptoms of dementia can include:
- Difficulty perform familiar tasks (like cooking, driving, shopping, social interaction)
- Problems with language (problems finding the right word, using inappropriate words, difficulty understanding what has been said)
- Disorientation of time and place
- Reduced judgement or making risky decisions
- Problems with abstract thinking (like balancing the cheque book)
- Changes in mood/behaviour (low mood, anxiety, psychotic symptoms)
- Changes in personality
- Loss of initiative (may need reassurance and prompting to start tasks)
According to Alzheimer's Australia (2011), it takes approximately 3-5 years from onset of symptoms to diagnosis of dementia. It is all too common that I hear family members/carers saying that they have noticed changes in their loved ones for some time. Unfortunately, there is no cure for dementia, however the earlier that it is picked up and diagnosed, the earlier that the person and their often struggling families/carers can be linked with supports to help guide them through their journey.
So where do you go if you notice your loved one experiencing the above listed symptoms?
The first port of call is usually your GP. The GP has the ability to be able to order screening tests and may suggest a provisional diagnosis before referring out to a specialist, such as a neurologist, geriatrician or older persons psychiatrist.
BUT, what if you are struggling to convince your loved one to go to the doctor as they don't think there is a problem, or may be hesitant as they are scared about what they may hear?!
This is common and there is no easy answer. What works for one person, may not work for another.
One way can be to suggest that the person have a check up regarding their medication or for a physical symptom they may be experiencing, such as pain, headaches or reduced eyesight. Even putting forward to them the idea of both having a "physical check-up." It is important not to force the person to go to the GP. Gradually planting the seed that you are concerned may support the person to be more open to a GP visit and enhance their motivation to attend.
Sometimes, other services such as occupational therapists, social workers, counsellors and dementia specific support workers may be less intimidating and an avenue for support and linkage to community services. Even if there is no diagnosis, such health professionals may be able to work with you and your loved one on the problems that you are having. Whilst it can still be important, occupational therapists often don't need to know a diagnosis. Rather, they want to know what impact the condition is having on someones everyday life. OTs then strive to help the person and their loved ones to identify strategies to make their life better and do the things they want and need to do.
Stay tuned, as my next blog will focus on what we as occupational therapists can do to support a person and their loved ones who are experiencing dementia or symptoms of dementia. Including where to go to on the Eyre Peninsula for support!
For more information relating to the above post, visit:
Dementia Australia, 2018. About dementia, https://www.dementia.org.au/about-dementia/what-is-dementia, date viewed 24th November 2018.
Alzheimers Australia, 2011. Living with dementia, can we do better? report, https://www.dementia.org.au/files/Timely_Diagnosis_Can_we_do_better.pdf, date viewed 24th November, 2018.
Image 1 (above): sourced from sciencedaily.com
Image 2 (below): sourced from brightfocus.org
Occupational Therapists (OTs)
Our numbers are on the rise with approximately 20,975 registered OTs working in Australia currently, up from 13,611 in 2012 (AHPRA, 2018). But what exactly do we do?!
OTs work with people of all ages and in various settings. OTs can work with people through all aspects of life such as taking care of oneself and others, volunteering, working and participating in hobbies, interests and social events. OTs call these things “occupations”. The ideal goal of OT is to support people to participate in the activities of everyday life. OTs help people overcome the barriers that they face in doing the things they want and need to do. OTs might do this by modifying the environment, helping a person establish/restore skills or adapt the activity that the person is having trouble doing.
OTs are concerned with what people can and can't do (but want/need to do), and how this impacts on their overall quality of life. As humans, we have an innate desire to "do", and when we are hit by a road block (like illness, injury, ageing and disability), we can sometimes find the things that we want/need to do more difficult. Sometimes this can lead to people losing independence, becoming socially isolated, not being able to fulfil their values/roles and leading to an overall reduced quality of life that lacks purpose. This is where OTs come in!
Why is it called 'Occupational Therapy?'
"In occupational therapy, occupations refer to the everyday activities that people do as individuals, in families and with communities to occupy time and bring meaning and purpose to life. Occupations include things people need to, want to and are expected to do." (WFOT, World Federation of Occupational Therapists).
For more information, visit:
Allied Health Practitioner Regulation Agency, 2018. Occupational therapy board of Australia - Statistics, https://www.occupationaltherapyboard.gov.au/about/statistics.aspx, date viewed 22nd November 2018.
Occupational Therapy Australia, 2018. What does an ot do, http://aboutoccupationaltherapy.com.au/what-does-an-ot-do/, date viewed 22nd November 2018.
Bond University - bond.edu.au.
The incidence of falls and falls-related injury continues to increase with the ageing population and as health professionals, we try and work with older adults to reduce their risk of falling as much as they can. Environmental modification is one way to reduce the risk of falls, and so too is exercise! Exercise that incorporates balance and strength based activities are effective in reducing falls in older adults living in the community. Older people living in rural or remote areas are not only at risk of falls, but are also at greater risk of social isolation and loneliness; potentially leading to negative effects on their physical and mental well-being.
In August this year we collaborated with West Coast Home Care and Tim Manning (Exercise Physiologist - EP Physio Plus) to develop a wellness and reablement group program to meet the needs of older adults in Port Lincoln and surrounding areas. The group aim was to target the physical and mental wellbeing in older adults by promoting social connection and falls prevention in a fun and safe environment. The group was structured in a way that incorporated fun circus moves (including coordinated juggling, spinning plates and balancing activities); encouraging participants to learn, train their brain, have a laugh and also reap the benefits of tailored strength and balance exercises. Participants that were identified as being socially isolated and at risk of falls were encouraged to attend the group.
The 9-week PILOT group which ran once a week for 1.5 hours had positive results with regards to the physical and mental wellbeing of the participants who attended. Pre and post outcome measures were administered including the Timed Up & Go, Five Times Sit to Stand Test and Assessment of Quality of Life - 8D (AQOL-8D). In all 3 tests that were administered, there was an overall reduction in scores at the end of the 9-week program, indicating improved overall mobility and quality of life for the participants. Both Tim and I were ecstatic at the results!
For the Timed Up & Go Test, there was an average improvement of 4.98 seconds (35%) with the average score reducing from 14.3 seconds to 9.3 seconds, suggesting improved mobility, balance and walking ability and reduced risk of falls. With regards to the 5x Sit to Stand Test, there was an average improvement of 7.17 seconds (37%) from 19.1 at the start of the group program to 12 seconds by the end of the program. The AQOL-8D was administered at the end of the 9-week program and there was an average 3-point reduction in scores, indicating improved overall quality of life. In particularly, scores indicated that there was a reduction in worrying, feelings of social isolation and despair, difficulty sleeping and feelings of being a burden. Scores also suggested reduced reliance on others, reduced sadness and reduced difficulty moving around. AQOL-8D post-measure scores highlighted that participants felt an increase in energy, ability to cope, confidence, feeling content in life and happiness.
One participant said that she “thoroughly enjoyed the group and would recommend it to others.”
Feedback forms were provided to group members at the end of the program with one participant commenting that the “company was great.” Another participant commented that it was the “fun and friendliness” that they enjoyed most about the group.
Whilst the number of participants in the PILOT group was small, the positive outcomes have given us great faith that this kind of group program can really benefit older adults in our community. As a result, we are now running two groups a week this term and hope to continue the group into next year - as well as spread our wings to communities on the EP beyond Port Lincoln!
For more information on the group program and referrals, please feel free to contact us!
Brooke George, Occupational Therapist