World Dementia Council Global Care Statement

 

Statement on Importance of Care and Support

World Dementia Council

All persons affected by dementia – those living with
the diseases that cause it, their care partners, and their
family and friends – have a right to receive the highest
quality care and support possible to meet their needs.

They have the human right to be treated with dignity
and respect. And they are entitled to full and effective
participation and inclusion in society.

These rights transcend national boundaries and cultures.

Person-centered, high-quality care and support
should respond to the unique, individual needs of
each person and include rehabilitation and disability
support.

It should be delivered by well-trained
individuals, whether professionals or family and friend
care partners.

Such care and support can result in improved health
outcomes and quality of life, enhanced comfort, and
decreased stress for persons living with dementia.

For their care partners, it can enhance their health
and strengthen the informal support system. And, by
lessening the burden on health and long-term care
systems, it can help to lower costs.

Principles of High-Quality Care and Support

To ensure the right to high-quality care and support for people living with dementia and their care partners,

the following principles should guide the provision of care and support in all countries:

1. Individuals receive a timely and accurate diagnosis
– and are told of that diagnosis and its realistic
consequences. This is the gateway to making
informed personal life decisions and decisions about
medical treatment.

2. People living with dementia are entitled to respect
and dignity with full recognition that dementia in
no way diminishes the personhood of the individual
who has it.

3. Communities are inclusive of people living with
dementia, thus ensuring the opportunity for
participation and engagement by those living with
dementia, and empowering and enabling them to
remain in the community as long as possible.

4. Care is person- and relationship-centered.
Person-centered care is a philosophy of care
based on knowing the person, developing and
maintaining authentic relationships, providing
a supportive, culturally-sensitive environment
that includes opportunities for meaningful
engagement, and recognizing the person’s reality
and individual needs.

5. The provision of person-centered care is based on
continuous assessment and individualized care
planning designed to maximize independence,
develop effective strategies for communication,
minimize behavioral and psychological symptoms,
and identify available support for people living with
dementia and their care partners.

6. People living with dementia and their care partners
are involved as active participants in care planning
and decision making and have access to information
and support throughout the continuum of their
disease from diagnosis to end of life.

7. Medical and care professionals have adequate
knowledge of all aspects of dementia and work
across disciplines to ensure a holistic approach to
disease management. This will ensure that people
living with dementia are provided appropriate
medical care, psychosocial care, and disability
support – for both their dementia and their
co-morbid conditions – throughout the course of
the disease.

8. Care coordination and collaboration occurs
between all care providers, including medical and
allied health and social care professionals, health
systems, family care partners, paid caregivers,
community services, and volunteers. Governments,
non-governmental organizations (NGOs), and
patient advocacy groups have an important role
in building collaboration among care providers
and in monitoring and evaluating the care and
support provided.

Lewy Body Dementia Testimonials

Lewy Body Journal

I have just today, while at work, found your wonderful website on Lewy Body Disease, and have found it to be absolutely compelling reading (particularly the journal), because of the similar diagnosis and illness of our own mother.

Your journal is the most touching, sensitive, and yet forthright, account of the progression of your own mother’s Lewy Body disease. But it is also the most informative and helpful document for us.

Your website will assist us in our attempts to understand this illness, when there is so little information about it available. This understanding will help us in our attempts to get the best possible outcomes for our mother. Thank you.

I am the eldest of four brothers (in our late 40s to mid 50s), and our widowed mother is 82. We all (brothers, wives, children) live in [city], South Australia (except for my twin brother and his family who live in [city]). We are a close-knit family and all keep in touch regularly.

Mum, at her own wish, lives alone in an “independent living unit” within a large church retirement village complex. This complex has tiered care available (including hostel accommodation, nursing home, dementia ward, hospital) if and when the need arises. But since mum’s diagnosis about 18 months ago, we have been really concerned about what is in store for her.

For at least a year before her diagnosis she showed developing signs of unusual behaviour, memory loss, auditory hallucinations, and physical frailty and tremors.

She now has government-subsidised carers calling twice a day to help her with medications, personal hygiene, some household chores, etc., and has meals delivered and a cleaning service. We all visit regularly, and the three local daughters-in-law help particularly with shopping, medical appointments, and lately, her developing incontinence problems.

We pay her bills, but mum is always agonising about attending to her “paper-work”. She was an active, lively, intelligent, musically-talented school-teacher, and later sub-editor. She was loved by many people. Before Dad’s retirement as a farmer many years ago, she helped him run a successful wheat and wool farm in Victoria. Dad was in many ways her quiet “backbone”.

He died in 1987.

The most hurtful thing for me is that she is alone so much of the time. She has a few good female friends who get her out, although this happens increasingly less often, and we visit and take her out when possible. However she walks with great difficulty now, using a walker.

She doesn’t discuss it with me (although we are close), but she does talk with my brothers about going into the nursing home some day. This seems to be the only alternative, as she is close to needing much more hands-on care.

Our fervent wish is that the nursing (and dementia) care will not be unbearable for her. Beautiful new facilities have recently been built for this purpose at the complex, and the care seems to be good. We also happen to be friends with the Director of Nursing there (my wife was a nurse and nursing administrator). There doesn’t appear to be an alternative.

Thank you again for articulating your story, and the issues this illness raises, so well, and for making it available to all.

Lewy Body Dementia Testimonies

Lewy Body Journal

My husband passed away in July of this year after 39 months of 24/7 home care aides, many trips to doctors and many medications.

When he was first diagnosed I scanned the Internet for information and found your Journal. I printed them all and have them in a large note book which was required reading for all of the caregivers.

I was fortunate to have good caregivers on the most part.

There were a few I had to part ways with because they just didn’t understand the differences between LBD and other dementias.

Treatment has to be given lovingly and if it is not the tide will turn in an instant. The biggest challenge with caring for a person with LBD is the great extremes of behavior. The fluctuations from day to day and during any one day are trying to any caregiver.

I was fortunate that we had taken out long term care insurance back in the 90’s. If we had not done that I would not have been able to have kept him at home.

He received far better care at home and it was easier on the family. We have two children who both live near and four grandchildren who could continue to visit as often as possible and it was important to his well being.

When I started to read your stories in the Journal I could see threads of behavior that crossed through many of the stories. It was frightening to read what was to come but I had to face reality to be ready for it.

He had triple by-pass surgery in 2004 and for awhile he was fit and felt good. But in 2006 we started to see the beginning signs of what was to be diagnosed as LEWY BODY DEMENTIA in 2009.

As I read more about LBD I realized that there were many other signs that it was coming. The symptoms mentioned that are associated with LBD were there:

  • Violent and acting out dreams, this was true for many years before any other signs.
  • Constipation
  • Difficulty in keeping track of sequences (poor multi-tasking)
  • Difficulty with spatial relationships

Those were the early signs which I helped to shield from others to protect him. That’s what wives do.

But when the hallucinations and falls started we had a problem. One time he could not get up and walk on his own. I called the ambulance and he went to the hospital for 10 days while my children and I prepared our “hospital” room at home for him.

We organized a schedule and caregivers started round the clock. I could not handle him alone. During the 39 months, I was hospitalized in 2011 and again in 2012 with some serious problems. But because I had a good built in system at home all went well.

I am on the monthly e-mailing list for the LBD Association (lbda.org) and I try to educate others about the disease. I also donated his brain to the Harvard Brain Bank to help with further research on the brain.

Thank you for being there for us.

HPB

Symptoms of Dementia with Lewy Bodies

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Dementia with Lewy bodies (DLB), also known as Lewy body dementia, is a common type of dementia estimated to affect more than 100,000 people in the UK.
“Dementia” is the name for problems with mental abilities caused by gradual changes and damage in the brain. 
It’s rare in people under 65.It tends to develop slowly and get gradually worse over several years.
This page covers:

Symptoms of dementia with Lewy bodies

People with dementia with Lewy bodies may have:

  • problems with understanding, thinking, memory and judgement – this is similar to Alzheimer’s disease, although memory may be less affected in people with dementia with Lewy bodies
  • periods of fluctuating alertness alternating with periods of confusion or sleepiness – this can change over hours or days
  • slow movement, stiff limbs and tremors (uncontrollable shaking)
  • hallucinations (usually seeing or sometimes hearing things that aren’t there)
  • disturbed sleep, often with violent movements and shouting out
  • fainting spells, unsteadiness and falls

These problems can make daily activities increasingly difficult and someone with the condition may eventually be unable to look after themselves.

Read more about the symptoms of dementia with Lewy bodies.

Getting medical advice

See your GP if you think you have early symptoms of dementia, especially if you’re over 65 years of age.

If you’re worried about someone else, encourage them to make an appointment with their GP and perhaps suggest that you go with them.

Your GP can do some simple checks to try to find the cause of your symptoms and they can refer you to a memory clinic or another specialist for further tests if needed.

Read more about getting a dementia diagnosis.

Tests for dementia with Lewy bodies

There’s no single test for dementia with Lewy bodies.

The following may be needed to make a diagnosis:

  • an assessment of symptoms – for example, whether there are typical symptoms of dementia with Lewy bodies
  • an assessment of mental abilities – this will usually involve a number of tasks and questions
  • blood tests to rule out conditions with similar symptoms
  • brain scans, such as an MRI scanCT scan or a single photon-emission computed tomography (SPECT) dopamine transporter scan – these can detect signs of dementia or other problems with the brain

Read more about the tests used to diagnose dementia.

Treatments for dementia with Lewy bodies

There’s currently no cure for dementia with Lewy bodies or any treatment that will slow it down.

But there are treatments that can help control some of the symptoms, possibly for several years.

Treatments include:

  • medicines to reduce hallucinations, confusion, drowsiness, movement problems and disturbed sleep
  • therapies such as physiotherapyoccupational therapy and speech and language therapy for problems with movement, everyday tasks, and communication
  • psychological therapies, such as cognitive stimulation (activities and exercises designed to improve memory, problem-solving skills and language ability)
  • dementia activities, such as memory cafés (drop-in sessions for people with memory problems and their carers to get support and advice)

Read more about how dementia with Lewy bodies is treated.

Outlook for dementia with Lewy bodies

How quickly dementia with Lewy bodies gets worse varies from person to person.

Home-based help will usually be needed, and some people will eventually need care in a nursing home.

The average survival time after diagnosis is similar to that of Alzheimer’s disease – around 6 to 12 years. But this is highly variable and some people live much longer than this.

If you or a loved one has been diagnosed with dementia, remember that you’re not alone. The NHS and social services, as well as voluntary organisations, can provide advice and support for you and your family.

Causes of dementia with Lewy bodies

Dementia with Lewy bodies is caused by clumps of protein forming inside brain cells. These abnormal deposits are called Lewy bodies.

These deposits are also found in people with Parkinson’s disease, and they build up in areas of the brain responsible for functions such as thinking, visual perception and muscle movement.

It’s not clear why the deposits develop and how exactly they damage the brain. It’s thought that part of the problem is the proteins affecting the brain’s normal functions by interfering with signals sent between brain cells.

Dementia with Lewy bodies usually occurs in people with no family history of the condition, although there have been very rare cases that seem to run in families.

NHS https://www.nhs.uk

More information

Living with dementia

Find dementia activities near you

Living well with dementia

Staying independent with dementia

Dementia activities

Looking after someone with dementia

Dementia and your relationships

Communicating with people with dementia

Coping with dementia behaviour changes

Care and support

Sources of help and support

Organising care at home

Dementia and care homes

Dementia, social services, and the NHS

Dementia and your money

Managing legal affairs for someone with dementia

End of life planning