Tag: carers

Keeping The Connection

Brett2 Comments

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I thought about what makes dementia care rewarding for me and I realized it is ‘keeping the connection’ with that person for as long as possible. The challenge with dementia is that the person may be in the later stages and not be able to tell you their passion. They also are a moving target and as the person declines we often accept that they can no longer do a certain skill anymore. eg a lady may no longer be able to knit.

In my mind, it is the role of the carer to adapt to the person with dementia’s current abilities and not just accept that a skill is gone, but be determined to find a way to make that passion or skill continue to have meaning to the resident. With the knitting example if the person can no longer knit, they may feel like a failure and lose confidence in themselves, and this may lead to depression. What sort of things could we do to make that knitting skill relevant to her???

I thought long and hard about this and I probably would obtain a whole bag of different coloured balls of wool and offer them to the resident to try and sort into colours. It doesn’t matter whether she is correct – it is whether the person is engaged in doing so that matters. Does she like holding the wool? Is she feeling the texture of the wool? Is she comforted by having wool on her lap? Can she still hold the knitting needles? I would bring in a knitted baby jacket and watch her reaction. Does she light up? Does it spark a conversation or feeling within her?

Maybe the resident is further along the journey and cannot respond in any way, so we have to become more creative. We could talk with the resident about knitting and what experiences we may have had with it. It may be a one sided conversation, but it is her eyes that are the gateway to what she is thinking. We could sit next to her and place the wool on her forearm and just stroke her skin with it to see if she has feeling. Does the warmth make her feel comforted? What happens when you place a knitted lap rug over her? Does she draw it towards herself?

I know nothing about knitting but it is a great opportunity for me to learn a new skill. If the person with dementia was still able to knit I would get her to teach me. Asking questions about what type of items she has knitted for her family members can spark an engaging conversation about a certain period in her life. Unlocking these passions again is what caring is about for me. The day to day tasks such as meals and tv and activities is mundane, but to tailor an activity around a passion of a resident and make them the ‘star/focal point’ for that day can make them feel really special and empower them for that moment.

I would like to see caring performed at a ‘deeper level’ in the future and if I was a team leader or supervisor I would like to actually ask the carers some questions to indicate their interactions with the resident eg. Tell me what what you learnt about Mrs Johnston this week? ….Was there anything you did this week with Mrs Johnston that you felt engaged her? Have you noticed any declines in her abilities?…How do you think we can deal with this?…Do you have any ideas with how we can bring out the best in this resident?

Our carers and nurses are so used to doing ‘tasks’ that the person with dementia’s feelings and self esteem is the element of caring that is being sacrificed when the resources are stretched. Most carers do what they do because they actually care about people. If you do not empower the carers to spend time making a difference to each person, they are actually bored as well and just doing tasks because they have to. If we lose this ‘person orientated’ focus, the residents will die of boredom. The light within them will go out and this will be really sad.

Something to think about……

A Time When Small Things Matter

Brett0 comment

 

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Today’s blog is one I am doing with a tinge of sadness, but also with a whole mix of other emotions. As a family we are at a really tough time in our dementia journey and are ‘savouring the small things’ with Bob. Dad has declined further and has had multiple TIA’s (mini strokes) of late and is now bed bound and receiving pain management as he screams out every time he is moved. His legs are locked open (like a frog’s legs) and we suspect a hip fracture even though he has had no falls. So how can this happen?…we will never know, but I would suspect it happened in the lifter.

Our family is starting to rally and we are flying in my brother from Sydney to spend ‘quality time’ with Dad. I am personally watching for every smile and any acknowledgement Dad can give me. He does a little ‘finger flutter’ thing when I hold his hand which is him telling me he is ‘ok’ and enjoying the song I am playing for him (we run his favourite music 24/7). It is amazing how ‘finely tuned’ we have become and our conversations have become hand and eye movements, but we know exactly what we are feeling.

An interesting thing I wanted to share with you is that our family have noticed a ‘distinct shift’ in the demeanour of the carers and nursing staff. They are ‘ultra-sensitive’ to Bob’s ever changing symptoms, have increased their caring regimes, and also shown a new tenderness and kindness towards both Bob and our family. We are witnessing people who actually ‘feel’ their residents change, and they are actually preparing our family for what they know is coming. It is both incredibly comforting and amazing to watch ‘human nature’ naturally unfold.

The staff reactions and their body language are the key indicators I personally use to gauge where we are at with Bob’s decline. They are reporting to us with any new symptoms (no matter how small), offering support, rubbing our shoulders and giving us hugs without notice. This is the ‘real’ side of people close to the action, who are emotionally invested in the resident. The nursing home staff are impacted just like the family members because in many cases they become the residents’ ‘new family’ as they are the ones caring for the person on a day to day basis. We are very lucky to have such kind staff who have looked after Dad so well across a long period of time.

I had a fabulous chat with a long time carer yesterday who opened up to me and shared her thoughts on families. She paid us the ultimate compliment by saying “I really love families like yours, you are so involved and show so much care and compassion and really work in well with the carers”. She also said “ us carers have to cop so much abuse from family members who may have sibling rivalry, jaded views of aged care, their own mental health issues and no idea what care we actually provide for their loved one.” I totally understood what she was saying as the family often only gets a 15 minute ‘snapshot’ of the care offered and can form very misguided views.

The carer talked about how our family’s journey in aged care should be the ‘new standard’ for all families, and should be a collaborative team effort. ….this was music to my ears as it was exactly what I tell people when I do my talks. The carer finished the chat by saying how even though they only earn $20/hour they have personally bought clothes for residents from the Salvos because the families refuse to bring any in. Some carers buy better quality shavers (and keep them in their car) to offer a smoother shaving experience to the resident. She then explained how she has gone home in tears on so many occasions because of how she has been impacted by what has happened to the residents.

This won’t be the last time I say this to the carers (personal and lifestyle), nurses, cleaners, cooking staff, maintenance guys, volunteers and aged care management team but ……“Thank you”…..

New resource to empower people living with dementia and carers

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A new consumer guide that sets out the level of care that people with dementia and their carers and families should expect is now available.

One of the first of its kind, the Consumer Companion Guide – Diagnosis, treatment and care for people with dementia, was developed by people living with dementia, carers, researchers and clinicians from the National Health and Medical Research Council’s Cognitive Decline Partnership Centre (CDPD).

Dr Kate Laver, NHMRC-ARC Dementia Research Development Fellow at the Department of Rehabilitation, Aged and Extended Care Faculty of Medicine, Nursing and Health Sciences at Flinders University is the lead co-ordinator of the Consumer Companion Guide.

Dr Kate Laver was also involved in the development of the Clinical Practice Guidelines and Principles of Care for People with Dementia, 2016 which were launched in March this year by the Health Minister, Sussan Ley, at the Alzheimer’s Australia National Consumer Summit.

“The objective of this project was to develop a companion guide for members of the public to complement the Clinical Practice Guidelines to ensure that the information in the Guidelines is more accessible to those who need it most, regardless of their varied levels of health literacy,” Dr Laver said.

The Consumer Companion Guide includes information about the Principles of Dignity of Care, including:

  1. Zero tolerance of all forms of abuse
  2. Support people with the same respect you would want for yourself or a member of your family
  3. Treat each person as an individual by offering a personalised service
  4. Enable people to maintain the maximum possible level of independence, choice and control.
  5. Listen and support people to express their needs
  6. Respect people’s privacy
  7. Ensure people feel able to complain without fear of retribution
  8. Engage with family members and carers as care partners
  9. Assist people to maintain confidence and positive self-esteem
  10. Act to alleviate people’s loneliness and isolation

 

Alzheimer’s Australia National President Professor Graeme Samuel AC said consumers played a key role in the development of the Consumer Companion Guide to ensure the document is relevant to the needs of people living with dementia and their carers.

“These guidelines are an example of the significant impact that can be achieved when consumers partner with clinicians and researchers,” Professor Graeme Samuel AC said.

Dr Jane Thompson who cared for her husband who died of Alzheimer’s disease in 2007 was one of the five consumer representatives on the collaborative working group.

“There were no Australian clinical practice guidelines for dementia when I was caring for my husband, let alone versions summarising the information in an accessible form,” Dr Thompson said.

“I know I would have benefited enormously from having had access to such an up-to-date summary of the best available evidence.

“I welcome the availability of the Consumer Companion Guide and hope that it will improve the quality of care for those people currently living with dementia, their carers and families.”

A copy of the Guide can be found here https://www.fightdementia.org.au/national/about-dementia-and-memory-loss/resources/clinical-practice-guidelines

The development of the Clinical Practice Guidelines and the Consumer Companion Guide were funded through the NHMRC Partnership Centre: Dealing with Cognitive and Related Functional Decline in Older People.

Source: Alzheimers Australia website