Whilst there is no cure yet, early diagnosis of dementia is important in ensuring appropriate supports are put in place and that you, your family and your loved one are given the right information on future planning. Additionally, education about the dementia process, what to expect and how to manage it can be provided to help you to provide the best quality support possible while looking after yourself at the same time. In some cases, your loved one may also benefit from the prescription of medication.
Why is a "label", a "diagnosis" so important? People have different views on this, however, knowing what might be going on for your loved one by "naming" it, can help you, your family and your loved one to better understand why your loved one is acting the way they are. Labelling it as it is, dementia, means that we are less likely to blame the person for acting like they are (e.g. forgetful, aggressive, agitated, anxious, nervous, depressed), and rather blaming the dementia. This separates the person from the dementia and means that we are better able to find ways to support that person as opposed to getting frustrated with them!
So, how do you get a diagnosis?
There is no one straightforward process. Firstly, it is extremely common for people to have difficulty trying to even bring up in conversation with their loved one the fact that they are worried about their memory and thinking, let alone getting them to the GP for a "check-up." The person experiencing the brain changes may be in denial about what is happening to them, and/or extremely frightened.
If you can, encourage your loved one to have a GP appointment for an assessment, particularly to rule out if there are any medical issues that may be contributing to their memory and thinking problems. The GP may then start some cognitive screening and a referral may then be made to a specialist.
If your loved one will just NOT go to the GP, you might find it helpful to:
👉🏻 Speak to us for more information on how to approach the situation and getting a diagnosis
👉🏻 Speak to Dementia Australia
👉🏻 Contact the Aged Care Assessment Team (ACAT) through My Aged Care website
👉🏻 Call the National Dementia Helpline1800 100 500
For many OTs, working in Australian residential aged care can be challenging because of the “system” and funding and what our role is perceived to be.
I get called “the physio” daily.. and yes, our roles do overlap and I think our jobs are often perceived to be very similar (in residential aged care); which is likely heavily influenced by the funding instrument we are guided by - as this guides a lot of “what we do.”
Now more than ever I am reflecting on our profession and what is at our core. Aged care has allowed me to see so much potential in what OTs can do to make a difference, but has also led me to see the challenges that often get in the way.
The other day I offered a “pain treatment” to a resident and she declined; she didn’t want a massage that day. I could see some dice and Yahtzee score cards hidden under a pile on her dressing table and asked if she wanted a game, she was over the moon I had asked and agreed with so much excitement.
What I observed:
- She smiled the whole game
- She conversed more than I had ever seen
- She didn’t complain of pain
- She laughed, especially when I made her aware that she was beating me
- She used her brain to count and add (mental stimulation... tick!!)
- She worked on her fine motor dexterity skills (helping her to continue to be able to button her shirts and do up zips)
- She helped me (so much sense of empowerment and purpose!!)
- She said thank you about 100 (slight exaggeration, but you get what I mean!) times throughout; thanking me for taking the time out of my day to play her favourite game with her
This. is. occupational.therapy!!
Finding what is meaningful to someone and supporting them to do it.
Now my next plan of attack will be to support this resident to engage in Yahtzee on a regular basis without me having to be there... any ideas on how I can go about doing this?! 💡
“But the bus is coming, I need to go home.”
“I need to pack up all my things and get home.”
"Please take me home will you."
These are all common things I hear from people living with dementia, especially those in aged care facilities and those in the later stages of the disease. This often occurs in the afternoon, often called the "sundowning period" - but not always.
We need to consider that people with dementia can experience varying degrees of consciousness. For example, one minute they may be looking to go home to feed their small children, and the next minute they may become aware that their children are grown adults now. Our job is not to orientate them to reality, but sometimes this happens naturally.
We need to think about validating their distress and empathising with them. Meeting them in their reality is not lying to them.. It is ok to meet them in their reality, which may be many years ago. Us telling them "you are not going home, you live here now.." is likely going to LEAD TO MORE DISTRESS.
Why are they searching for home? What underlying need hasn’t been met? Are they looking for safety? Familiarity? Routine? What are they going home to do?
So how do we respond when this happens? What do we say to them?
1. First, VALIDATE..
Validate their distress and match their emotion.
“You seem worried, can I help you?”
Mirror their facial expression, if they have a frown and look concerned, try and match it. Mirroring a persons emotions helps to show empathy.
Reassure them that you understand that they want to go home.
“I understand you want to go home.”
"YES, I want to go home!” They say...
“You want to go home” you could then say. Match what they are saying. This often leads to more conversation and more hints about what they are seeking!
"THE MOST IMPORTANT THING THAT WE WANT TO DO IS TO HELP THE PERSON WITH DEMENTIA EXPRESS THEIR EMOTIONS, AND FEEL AS THOUGH THEY ARE HEARD AND LISTENED TO BY AN EMPATHETIC CAREGIVER. "
Try using factual questions that include "when, what, who and how." Try to avoid using "Why?"
“Tell me about your home, what is it like?”
“What will you do when you get home?”
Find the underlying need why they want to go home.
What are they needing to do? Talk about it. “I need to get home to the kids.” “You need to get home to the kids, tell me about your kids” you could respond with. May be they need to get home to cook, or meet their husband.
This is one way we can validate, but also reminisce with them. Asking such questions helps the person to reminisce. LISTEN EMPATHETICALLY. This means listening to what they are saying, use eye contact, match their emotion, use non-judgemental words, use gentle touch if appropriate.
Although we are not always trying to bring the person with dementia back to reality, sometimes this happens, and sometimes they realise that they are not going home.
2. REDIRECT only after you have validated their distress. Re-direct to a meaningful task. A task that makes them feel needed and as though they still have purpose can be helpful.
“Can I ask a favour of you? Can you help me set the table? I could really do with a hand!”
May be you could ask them to help you set the table, or wipe down the furniture, or even wipe the dishes while you wash! Try and do the activity "with" them. Make sure the activity matches their abilities and interests. We may not be asking a person who hates cooking, to help prepare dinner. An occupational therapist can help you to identify a list of suitable activities.
Re-directing is not "distracting" or "dismissing" their emotional needs, particularly if we have validated them first.
"But I didn’t order that!!!"
Travelling the somewhat (if there is such a thing) “non-touristy” parts of France has shed light on a very common problem for many people living with dementia - communication!
Unfortunately I cannot speak French and whilst luckily for me there are many English speaking French people, I am still experiencing the frustration I’m sure many people with dementia do when trying to communicate what they want and need. I also cannot read French, and when you’re at a French restaurant with a French menu and French speaking waiter, you’re bound to end up with something very “interesting” on your plate that you swear you never ordered!
Whilst my experience far comes close to what people with dementia experience, I like to think it has helped me to try and put my feet in the shoes of those with dementia experiencing language difficulties. We take spoken language for granted until we are put in a position where we can no longer use it effectively. For example, being in a foreign county where you cannot speak the language!!
MANY people with dementia can experience language difficulties; the part of their brain that recognises, interprets and expresses language may be affected. This can be both written and verbal language. What happens when you can’t understand what people are saying to you or express what you need? Generally frustration! The emotional center of the brain takes over. For people with dementia, this frustration can often express itself in anger, physical and verbal aggression, wandering, depression and anxiety/panic.
What have I noticed? The power of body language! I’m talking things like eye contact, body positioning and hand gestures (lots of pointing at baguettes at the patisserie!). When we are communicating with people with dementia with language barriers we need to put body language on a pedestal; it is so important! Some simple things to consider when communication with people with language difficulties include:
How often do you have a genuine chat to the barista that makes your coffee?
"Social isolation is the public health risk of our time" according to Susan Pinker who spoke at a TED Conference in 2017 about social integration being a significant factor in prolonging age and lowering our risk of developing dementia.
This week I'm heading to Sardinia, an Italian island just below Corsica and north of Tunisia, and so I wanted to find out a little more about it before I arrived - and, what better way than to listen to a TED talk about it (which is relative to health and ageing - my favourite topic! Winning!)
Sardinia; where men live as long as women (unlike the rest of the developed world) and there are more centenarians (people over the age of 100) compared to anywhere else in the world. There are 10x more centenarians in Sardinia as there are in North America per capita.. why?
Researcher and Psychologist Susan Pinker mentions in her TED talk (link below) that 25% of the reason why people in Sardinia live longer is genetics. The other 75% you ask? LIFESTYLE, and in particularly social integration! So what are they doing right? In her TED talk, Susan looks specifically at the town of Villagrande.
Firstly, the dense layout including small apartment style living and narrow streets with a village square means social connection cannot be avoided. Ageing Sardinians are never left to live solitary lives. Family regularly drop by to drop of fresh fruit and vegetables, the baker stops by to stay hello and the barista will have a good yarn in between making an espresso. Family members do not see it as a burden to look after ageing relatives, but rather a privilege.
As Susan says in her TED talk, "it is a biological imperative to know we belong." We need social connection and it seems as though without it, we are at higher risk of mortality.
A third of the population says they have two or fewer people to lean on and with the rise in social media and use of technology, that number is surely going to rise. But is connecting via technology a form of social connection you ask? Well, it may be.. BUT, studies looking at brain scans have shown that our brains respond differently when having face-to-face contact with people.
Think a different burst of neurotransmitters and "feel good" chemicals being released.
So, get off your phone and chat to the barista, the girl at Woolworths scanning your groceries, the man who walks past your house with his dog.. It's good for you!
To watch the TED talk click on the link below:
Let's not confuse apathy with laziness //
Have you ever wondered why your loved one with dementia has stopped doing things they used to once do and enjoy? Does it get frustrating when you feel as though you have to remind and encourage them to do things; things that they once did automatically without needing a reminder?
Let's talk APATHY. Apathy is very commonly experienced by people living with dementia and it is not by choice. Apathy essentially means a lack of internal drive to complete tasks. Apathy may look like this:
Apathy is often misdiagnosed as depression. Unlike depression, apathy is generally not associated with sleep problems, sadness, a sense of hopelessness and impaired attention.
So, how can we support someone who is experiencing apathy:
For more information, please feel free to contact me either by phone or email at email@example.com.
Wishing you all the best and always remember, don't be afraid to ask for help,
Many family members and carers of a loved one with dementia feel extremely down about the thought of visiting their loved one in an aged care facility. Often, the visits bring with them much sadness and overwhelm that often family members and carers dread them and put them off. The visits can result in family members and carers having to grieve the loss (once again) of their loved one with dementia who is "not the same anymore."
Having worked in residential aged care, I see first hand the distress that family members can experience when visiting their loved one with dementia. Time and time again, I see the visits gradually drop off and when family members once visited weekly, they now come monthly.. and then that turns to visiting only on special occasions. It is understandable that family members want to avoid the distress that comes with those visits, and to do that, this may mean reducing the visits all together.
But, what I want to stress to you all is... YOUR LOVED ONE APPRECIATES YOUR VISITS. They may not be able to remember your name or how you are connected to them, but they appreciate your company. Visiting your loved one and maintaining a connection with them is important for both your wellbeing and your loved ones, only if the experience is a positive one. So, how do we promote positive visits whereby you walk out feeling glad that you visited and excited for the next visit?
Firstly, be mindful of your expectations of your loved one. They may now be at the stage where conversation and finding the right word is difficult for them. So, instead of sitting around the table where you are forced to have conversation, can you add in an activity? Can you put a puzzle on the table? Can you bring the photo album out to encourage reminiscence? Having an activity as the means for connection can reduce the stress that your loved one may feel in having to "find the right word" and also can help you connect with them when words are no longer an option. You are generally sure to get a few laughs along the way! To help identify suitable activities, it may be worth speaking to the Occupational Therapist or Diversional Therapist at the facility.
Can you attend the facility during meal times? Maybe you can sit with your loved one whilst they eat their meal? Could you bring your lunch with you and sit with them and the other residents, conversing in-between mouthfuls! Food, for a long time, has been a way that people connect, just because someone has dementia does not mean that this form of connection should be lost.
Keen to brush the cobwebs out on those bowls skills? What about finding out what the lifestyle program have scheduled for the month and coming in on a day where there is a fun and enjoyable activity that both you and your loved one enjoy? Whether it's bingo, singing, bowls, art/craft activities, it's sure to be one way to promote a sense of connectedness. One activity that I strongly recommend for families is to listen to music with their loved one if music is something they find meaningful. The music has to be something from your loved ones era and something they enjoy. The act of singing and dancing together often promotes feel good endorphins and can turn your visit into a very positive experience.
Lastly, I want to talk about some DONT'S when visiting your loved one:
- Don't say "who am I?" or test them on the names of family members. It is likely they will not remember. Putting them in a position where they are likely to fail is good for nobody.
- Don't try to reason with them. "If someone with dementia believes something to be true, it is true in their eyes." Reasoning will not work with someone with dementia and us continuously correcting them will likely lead to feelings of distress and failure.
- Be mindful of the way you speak to them. It can be easy to fall into the trap of speaking to a loved one with dementia like they are a child. Remember, they are an adult and need to be treated like one.
For more information and tips, follow my instagram and facebook pages (click on the icon link below).
Let's continue towards creating a dementia friendly community and helping increase the quality of life for those living with dementia and their loved ones!
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
Brooke George, Occupational Therapist