Living with a person who has dementia

Talking with a group of carers of people living with dementia today. Ordinary people faced with a journey of up to a decade of struggle with difficulty that they did not volunteer for or expect. Most taken by those facing support of a spouse with early onset dementia – young ones at home, Dad behaving oddly, workmates noticing, finally his golfing partner and doctor coaxes him to come for an assessment. Now they have a name for the oddness and can sort out what the next decade or more will hold. Plans for retirement and dreams of an old age together are ashes in her mind.

They want to know how to deal with the lack of motivation, the refusal to shower, the odd eating habits that are so new and confusing for the children. They are teenagers and don’t understand why Dad is embarrassing them more than usual. he seems oblivious. He is unaware that his behaviour has caused a seismic event in the lives of his wife and children. And he cannot help them for the first time in his life when they need him the most.

She is relieved when I say its OK to let him sit if that is what he wants. Make sure he has a balance of exercise and rest but don’t impose activity on him when all he wants to do is sit. His amotivation is causing him to sit and be difficult to get going,resistant to her urgings to talk, to walk, to go out together. She knows it would be good form him but her efforts are exhausting her. Now she can let him sit if that is what he wants to do. Its a matter of balance and not imposing her ideas of what he should be doing when all it does is create distress for her and resistance in him.

Another has a husband how goes to the post box and the back gate several times a day. Is he unsafe? Is she worried about him? Not now but it used to make her mad angry with him. Now its OK.

One won’t have a shower. Is he incontinent? or does he smell? or is his skin breaking down? If not then consider not pushing him to have a daily shower. Maybe change his clothes each day and check his skin if possible as you go. But don’t push the issue. Pick your battles. The goal is hygiene, so think about a way to achieve that . Maybe a basin wash or one of the newer chemical solutions that mean he doesn’t have to have water on his skin if that is what he doesn’t like.

If the issue is physical safety then you need to act. ie. If the person is walking into traffic or about to use a knife or machinery unsafely you have to intervene. But if it is not that urgent, be strategic and pull back, let the moment pass and think coolly about it. Perhaps talk to someone else about it. And then respond.

I hope some of this helps. Most of this comes from their collective wisdom.

If oyu have ideas yourself please share them here.

Bernie

 

 

DCM International Meeting Singapore

This week I am attending the Dementia Care Mapping (DCM) International Implementation Group meeting in Singapore.

There are 16 countries represented making it a real united nations experience. This group led by the University of Bradford Dementia Group maintain this quality improvement tool that is regarded world wide as “best practice” in the measurement of person centred dementia care.

In Australia DCM is not widely used but is effective in the pockets of aged care homes where it is used to great effect by the mappers. Over 750 people have been trained in thee use of the tool in the ten years since it was introduced by Virginia Moore and Kim Wylie. We at MPS hope it can continue to grow and become more widely known in aged care in Australia.

Some have suggested it is too expensive but when compared with the waste of money that goes into most training these days (that is ineffective in bringing about behaviour change in staff, which is the main aim of training is it not?) DCM is an economical method of implementing person centred change in cycles over time. The cost of maintaining trained mappers and giving them the time to map should be seen as an investment that is recouped every time they map.

More tomorrow as the meeting unfolds…

Bernie

 

German translation of “Hearing the person”

I am very pleased to let you know that “Hearing the person with dementia” is to be translated into German by Verlag Hans Huber, a Swiss publisher. This news came today from the UK publisher Jessica Kingsley Publishing.

Sales continue steadily throughout the world and it remains an easy to read help to families and paid caregivers who struggle with knowing how to communicate with people living with dementia.

Thanks for all your support over the past year in promoting the book to the many people worldwide who have bought it.

You can purchase it in English from our webstore

I will let you know when the German translation is available. If you want other language versions to be produced please contact the publisher Jessica Kingsley

Bernie

Life within reach for the person with dementia

Putting ‘life within reach’ is important for people with dementia who may not be able to remember where things are if they cannot see them. 

Fill their world with opportunities for stimulation and pleasure by filling drawers and cabinets with objects that trigger memories and offer interesting moments for remembering and doing.

Life needs to be within sight and reach to be of use to people who mostly have a “present” to live with. The past may be less obvious or available to them even though it may be influencing their every choice and preference.

Label drawers on the outside or have glass doors on cupboards to  allow the person with memory loss to see what is there, avoiding the moment of confusion and overwhelm that can cause angry rage or sad tears or both.

Hope this helps.

Bernie

Behaviour is a form of communication

 As Richard Ward suggests: “Irrespective of the severity or nature of impairment, a person with dementia will seek out and establish a means of self-expression and thereby make every effort to maintain a relationship with the world they inhabit”.

 What are the people in your care doing that is their way of communicating their inner experience to you? What are they saying to you?

Respect for each other’s work

I have been spending a lot of time recently in residential aged care homes sitting watching the people who live there and those who care for them.

It struck me as  I watched carers at work just how self-focused they had become. I watched a lifestyle staff member leading a group of people with dementia in an activity focused on Bastille Day and she was doing a good job of keeping people focused and enjoying it. However, as happens a few people became restless and began to walk away, one walking up close to someone else and causing some disturbance and another wanting to walk with a person who was listening. Someone else was snoring loudly and making it difficult for others to hear!

What is unusual about this was that there were two care staff nearby writing in files. This is a necessary part of the day but right at that moment they were treating their colleague as a “sitter”, someone to “mind” their people while they got on with their writing. This is not just a problem invovling care staff. It occurs with all staff groups.

What would have been more respectful of their colleague and more helpful in maintaining their residents in a good emotional state would be to assist their colleague by remaining engaged and attentive to what was happening in the group and intervening when needed.

Unfortunately this attentiveness can be rare, especially when staff are so focused on their own work that they lose sight of the bigger picture and the TEAM focus. Each different type of staff member contributes differently to the success of the day by assisting all others to achieve their own goals.

The consequence for the person in our care is they they are not the focus of our care attention – our job completion is. This becomes staff/organisation-centred care – not person-centred care. This is just one small way in which the institution and our work habits can get in the way of person-centred care.

What is your experience? Does this happen where you work? How can we organise our workplaces better so we have better cooperation among colleagues and more person-centred work practices?

Person centred care coordinator

It is not often that we see aged care organisations making person-centred care a formal part of their organisational structure and function.

Kalyna Care in Delahey (western metropolitan Melbourne, Vic) has done this by seeking a suitably qualified person for this new and interesting role of Person Centred Care Coordinator. Do you fit the bill? See what you think.

Position Description Person Centered Care Coordinator

Fiji Aged Care – Yvonne Jackson

Yvonne Jackson is a Australian aged care nurse living in Fiji where her husband is working for two years. She writes of aged care in Fiji:

Last week I was one of four women from the Corona Women’s Charity who visited the Father Law Home situated just outside Suva. We provided morning tea and $300 of groceries and donations from local companies which included adult diapers and frozen chickens. The Corona ladies try and visit every 3mths.

The reception was very welcoming with the residents and staff coming to say hello with their lovely big smiles. The morning tea was followed by Bob and other residents entertaining us with a few songs.

The elderly in Fiji are traditionally cared for by their families and the community, but like the Western world, people move leaving the elderly behind so care is needed. Suva has three age care facilities; the other two are ‘pay as you stay’. Father Law Home is free to residents therefore totally dependent on charities. This is typical of most health care facilities in Fiji, they are all trying to providing the best care they can with few resources they have.

We must accept that Fiji is a third world country, the elderly are not neglected but the money is just not there. Father Law Home was built in 1955. It is home for 25 men and women of mixed cultures who are cared for by 3 nuns and 8 paid staff, which include 2 cleaners and a cook.

We walked into an open covered area between the kitchen and the lounge/dinning, room where we were to have morning tea. Further along are the toilets, bathrooms and laundry. The bedrooms are 2 to 4 bedded and recently several of the small, men’s bedrooms, have been knocked onto one large shared room resulting in a reduction of privacy but let in a lot more light and air. Everyone agreed it is a great improvement.

Sister proudly showed me the lounge/dinning room. Her nephew came to stay with her and paid for the floor to be tiled (the torn lino and carpets removed), he painted the walls and replaced the 3 broken fans. A little goes a long way in Fiji.

The government provides free medical care, regular dental, eye checks and free burials. Father Law home has to pay their own electric, gas and water rates. They are dependant on grants, donations and charities. Residents do not pay but 3 families do donate approx. $200 a month. When I asked about their income I was given a long list of donations all small and all different but which together pay for the residents care. For example recently 2 local companies donated fish and chicken otherwise their diet is vegetarian (Father Law Home has a large chest freezer). Rotary are in the process of fitting water tanks (mains water supply is not dependable) and Corona want to replace the old broken toilets and showers but was told they work and we were asked if we could start with the fly screens which don’t work.

This is normal for most caring facilities in Fiji with little money available the needs are great. The list of organisations asking for help are endless, what we do is a drop in the ocean but we hope all those drops together make a difference.

Yvonne Jackson Fiji

If you can help with towels, sheets, pillow cases and light blankets etc., (even second hand) these items can be sent to Father Law Hom in Fiji. Contact the manager Veronica Mulu <veronicaflh@yahoo.com> to arrange it.

Attachment in care

Attachment is the bond of affection and care that characterises most of our close relationships as human beings and can be seen in many animals.

John Bowlby, the British psychoanalyst who is regarded as the father of attachment theory suggested that attachment is a phenomenon that is active throughout the life cycle from infancy to old age.

Attachment figures are the caregivers who provide a safe haven and secure base from which infants and then we as adults move out to form our own lives and establish intimate attachment relationships. As adults we also internalise the capacity to form secure attachments so that the attachment figure does not have to be in the room with us but we can still feel loved and safe.

Some people however do not internalise secure attachments. Rather they internalise insecure, anxious attachments or avoid attachments altogether in their lives.

Ainsworth who is regarded as the mother of attachment theory, identified three styles of attachment that I have just referred to: Secure, Anxious/ ambivalent and Avoidant. These continue into adulthood and are present in parenting or caregiving styles of parents and others involved in close relationships with others.

Caregiving is an attachment experience in which we act as attachment figures to people who are dependent on us to provide food, affection and safety. This is particularly true for people living with cognitive impairment who are unable to process life experience in the way they previous have done and who engage with the world of social relationships in a way that is reminiscent of their previous attachment styles.

So we see dependent behaviour, asking for mother or father, wanting to go home, asking what they can do next, calling out, sexualising contact, and being clingy as attachment behaviour of proximity seeking, a behaviour that is a hallmark sign of attachment.

However, such proximity seeking is not the only sign that an attachment is active. We also see angry outbursts, pushing the attachment figure away, attacking, as the reaction to an attachment need not being  met by the desired caregiver. Then if the attachment figure does not respond for long enough the person gives up and disengages. This is often the reaction we see by people living with dementia who are left for long periods without stimulation or not interacted with, not spoken to, not noticed, or simply ignored by passing staff.

Attachment behaviour in dementia is a common experience and the explanation for much ‘disturbed’ or ‘challenging’ behaviour.

Where have you noticed attachment behaviour in the people you care for?

Assaults increase in aged care

Recently released figures by the Department of Health and Ageing show a continuing increase in levels of sexual and physical assault of elderly people in aged care in Australia.

2007-8     925
2008-9     1411
2009-10  1488

Such a steady increase is disturbing and prompts me to ask if we are getting any better at both monitoring and preventing this abuse. The compulsory reporting legislation was designed to uncover the levels of abuse. It has done this by making it mandatory to report such events within 24 hours of occurring.

However, prevention of this behaviour is not addressed. Elderly people in care are obviously just as vulnerable to being assaulted as they were before compulsory reporting was introduced.

The prosecution of staff who have sexually assaulted elderly residents is small discouragement when we look at the levels of continuing assault. Where is the deterrent effect?

Better to improve screening of employees with psychological assessment and better background checks. Education is also needed in person-centred care values, attitudes and behaviour and on what constitutes abusive behaviour. The current meagre amount of dementia education and exposure to solid person-centred education is hopelessly inadequate in providing the industry with qualified and skilled carers. Qualified maybe when they leave school but not skilled. Providers skimp too often on this area and think they have satisfied their statutory requirements by providing one session per annum on “behaviour management”. Its not good enough any more and the public will call providers to task on this before too long by asking them what training they provide thier staff in dementia care and the person-centred approach.

Finally, where is the accountability of colleagues who see abuse occurring and say nothing? I have heard too often of staff remaining silent for fear of retribution or simply being ignorant that what they are seeing is unacceptable. The plea that they didn’t know it was abuse can no longer stand scrutiny. If you see it happening you have a responsibility both legally and morally to do something about it by reporting it.

These figures tell me that compulsory reporting is not yet working effectively to protect our vulnerable elderly people in care. We need a better strategic approach to prevention and its not happening from government nor from providers.