Exceptional In Home Dementia Care Examples
Hugs not Drugs
Mia, a much loved mother of 3 adult daughters, had symptoms stemming from her dementia, that challenge carers. She had been asked to leave two Nursing Homes because her daughters would not consent to her being given psychotropic medication that would essentially “stupefy her”. Read on to find out how Daughterly Care’s expert and loving Dementia Live In Care improved the quality of her life and avoided harmful medication.
Mia loved to walk around Narrabeen Lake. Being out in nature by the water, feeling the breeze on her skin and through her hair, seeing the water move and the young children with their mother feeding the ducks made her smile, feel alive and connected to life.
Mia and her Daughterly Care Caregiver often popped into our office on Narrabeen Lake to say hello before their walk. Mia was a truly delightful lady. (I write ‘was’ because sadly she passed over in 2013).
When Mia visited our office she would ask each of us what we were doing and offer praise. Mia found me in the filing area and told me I was doing a good job. She quipped “I hope they pay you well”. As a business owner I don’t receive a wage so I was technically correct when I replied, “Actually they don’t pay me a wage”. Mia was outraged. “Where’s the manager? I need to talk to her.”
Mia charged off resolutely towards Verlie, who I was point to. On her way to Verlie, Mia overheard one of our High Care Managers, laughing on the phone. (There are moments where if we don’t laugh we would cry… we take all the laughs we can… to stay sane).
Mia patted the Care Manager on the shoulder, “Stop laughing, you there on the phone, and get back to work!”
I asked Mia if she had worked as a Manager and her curt reply was “Of course!” I replied: “I thought so, you can tell very quickly who needs to work harder. I need a Manager like you here to keep the staff under control”.
Mia replied with confidence and self-esteem “My word you do!”
Mia’s short term memory loss meant she had forgotten where she was heading and why, so I introduced Mia to Verlie and they had a friendly chat.
Most people would not realise Mia was living with a form of dementia because she presented so well physically and she made such good social conversation, as long as she was leading it. However in the afternoon she suffered terribly from Sundowning.
She experienced extremely “distressing anxiety” where she became very agitated from fear, exhaustion and, if not properly supported, she would sob for lengthy periods.
Often the Mia’s of our world are inappropriately given anti-psychotic medication.
Let’s take a quick look at some recent Australian research.
Alzheimer’s NSW have a DVD ‘Antipsychotics & Dementia: Managing Medications – a free resource for healthcare professionals working with people living with a diagnosis of dementia’.
The video is 19 minutes long and whilst it was made for GP’s and other health professionals, if you were concerned about a family member being given too many medications, it is definitely worth investing 19 minutes to watch it so you are more informed around the issue. Click here to watch
Why has this video been produced?
Because recent research has identified that antipsychotic medication is used:
At the Alzheimer’s launch of this DVD, Professor Brodaty mentioned in his presentation that “psychotropic medications cost approximately $1.70 per day, whereas a quality care alternative costs approximately $6 per day”.
“The research also found that Caregivers are not being involved in the decision-making process of the care for their loved one. A 2009 study of Sydney Nursing Homes showed that only in 6.5% of cases was appropriate consent obtained” (Rendina et al., 2009 cited in The Use of Restraints and Psychotropic Medications in People with Dementia).
Also at the launch, the daughter of a Nursing Home resident spoke of her experience of discovering from the monthly pharmacy bill that her Mother had been put on psychotropic medication without the family being informed or being asked for consent. The medication caused her mother to become:
- bed bound
- unable to speak clearly; and
- unable to walk.
And as a result the family were told their mother was ‘not long for this world’ so they took her off all medication and, surprisingly, she started talking, walking, eating and re-discovered the joy of living!
According to 2009 research of Sydney Nursing Homes:
“ Most psychotropics, by virtue of their action on the brain, are associated with an increased risk of sedation, falls, urinary tract infection or incontinence, and worsening cognition” 
“About half of people in residential aged care facilities and up to 80% of those with dementia are receiving psychotropic medications, although this varies between facilities. There is evidence to suggest that in some cases these medications have been prescribed inappropriately. (Hosia-Randell & Pitkala, 2005, National Prescribing Service, 2013).
Ita Buttrose wrote in the forward of the Alzheimer’s Report: “the concern is that in many cases physical and chemical restraints are often the first line of response to behavioural symptoms when in most cases other approaches should be tried first”.
How is this research and the launch of the DVD relevant to Mia?
Mia had been asked to leave two Nursing Homes because of her ‘challenging behaviours’. Her daughters would not approve her being given psychotropic medication. Instead they bought her back to her home and engaged Daughterly Care to provide our Live in Care service in her own home.
Mia was delightful, engaging and a real character… however she suffered very badly from Sundowning.
Each afternoon she would become extremely anxious and afraid. Her brain was tired, she needed a rest yet she could not lay herself down and have a cat nap, instead she would cry.
She was suffering and there was no consoling her with words. Any explanation was forgotten as it could not pass through her short term memory and become ‘longer held information’. In this situation… words just did not work.
So what did our kind-hearted, intelligent, creative, very experienced and very professional dementia Live In Caregiver do that was amazingly exceptional dementia care?
She addressed the client’s true need, drawing on her years of dementia care experience with compassion and creativity.
Our Caregiver had to communicate via touch and emotion… she took Mia’s hand and asked her to lay down on the bed and then she asked “Is it ok Mia if I lay down here, I feel so tired?” and as the Caregiver said slowly, calmly and soothingly “sssssssssshhhhhhhhh it’s ok, you are safe, go to sleep… ssssssssshhhhhhhhhh it’s ok, you are safe, go to sleep” she patted Mia on the bottom, using a constant TEMPO… the same TEMPO you use to pat a crying baby to sleep.
Mia soon felt safe and comforted and fell asleep. Where upon our Caregiver left Mia sleeping to cook a nutritious, delicious smelling and tasty meal for dinner when Mia woke.
When I first heard this I thought:
- that is amazing
- that is exceptional dementia care
- now that’s person centred care – addressing the real need, not managing the symptom with drugs and mislabelling the client with negative labels
- that really is “heart-felt care”
- what compassion
- that shows genuine regard
- talk about a premium service – hugs not drugs!
My next thought was….
… not many Caregivers would feel comfortable doing that.
But when you have cared for an Elder ‘one-on-one’ for a number of years you develop an understanding and connection with them. You enjoy the good times for most of the day and then when it gets tricky you draw on your years of experience and you experiment with creative compassionate thinking and you try one-possible-solution after another until you find the person-centred care solution that works best with that client, at that time!!!!
And then fear crept into my thinking ….
… and I wondered “Is being that close to the client inappropriate and therefore crossing professional boundaries?”
And then I decided, no, this is exceptional dementia care of the highest order.
This is why health professionals call ‘Daughterly Care’ when they are helping a client living with dementia”.
Our extremely anxious client was soon comforted to sleep, which was just what her brain needed – a rest – time out to re-charge. She was free of her anxiety and fears all without psychotropic medication. Her specific needs were met at the exact time she was expressing herself.
The Caregiver was not patting Mia’s bottom for her own benefit. She was settling Mia in a way that she found worked… after she had tried many other diversions and validation therapy.
ask your partner to hug you and pat you on the bottom at the same tempo that you would pat a crying, over tired baby…
… when my partner did that, I was surprised how it made me feel.
I felt a primal sense of a “long-ago-experienced-sense-of-contentment-and-reassurance… on a deep almost unconscious level. I felt transported back to being comforted by my mother” and I was genuinely surprised it made me feel that way.
How many Caregivers would lay down and rhythmically pat a distressed client to sleep on the bottom?
When I write “Daughterly Care’s Caregivers provide ‘exceptional dementia care” on our website…this is the sort of personalised, deep, person-centred, in-home care I am referring to.
I can’t help but talk with passion about Daughterly Care Caregivers – their experience, patience, kindness and compassion mean they work miracles when providing Elder care.
Verlie’s mother always said to her “You are good medicine”. Just seeing Verlie made Thelly feel so much happier and ‘better’. We choose dementia Caregivers of the same ilk as Verlie – calm, kind, highly experienced, professional and compassionate… each one is ‘good medicine’ in their own unique beautiful way.
Kate Lambert B. Ec F. Fin
Choosing the best care for Mia
At the initial assessment of Mia’s care needs it was decided that Live in Care was far better suited to Mia than 24 hour care. Why?
Due to Mia’s dementia we believe she would not cope well with 3 changes of staff a day, but she could cope with one change-over of staff once per week. Whereas typically 24 hour care has 3 Caregivers each 24 hour period, with Live In Care we provide the same Caregiver for 3 days and a second Caregiver for 4 days and those two Caregivers roll forward for as long as the client is happy. A third Caregiver covers sickness and holidays.
Funding Mia’s Care
In Mia’s case her Government subsidised In Home Care package paid for 2 days of Live In Care, her 3 daughters each spent 24 hours every week with their Mum and Mia personally paid for 2 days of Live In Care. That made 7 days a week of live-in-care very affordable.
 The Use of Restraints and Psychotropic Medications in People with Dementia
A REPORT FOR ALZHEIMER’S AUSTRALIA
PAPER 38 March 2014
By Associate Professor Carmelle Peisah and Dr Ellen Skladzien
Link to https://fightdementia.org.au/sites/default/files/Publication_38_A4_print_version_Web.pdf