Category: The Campaign to Ban BPSD

Behaviour Change Ahead? – Continence – Urinary Tract Infections (UTI’s) and Dementia

One of the most common causes of the Emotional Responses of Dementia (ERD) can be a Urinary Tract Infection or U.T.I. Symptoms can be unsettling and the emotional responses may lead to the pathway of BPSD if the causes are not fully investigated.

According to the NHS website

UTIs can affect different parts of your urinary tract, including your bladder (cystitis), urethra (urethritis) or kidneys (kidney infection). Most UTIs can be easily treated with antibiotics.

Check if it’s a UTI

Symptoms of a UTI include:

  • needing to pee suddenly or more often than usual
  • pain or a burning sensation when peeing
  • smelly or cloudy pee
  • blood in your pee
  • pain in your lower tummy
  • feeling tired and unwell
  • in older people, changes in behaviour such as severe confusion or agitation

Note the last quoted symptom.

Yet how many people with a UTI get treated with Antipsychotics instead of Antibiotics

In the US, the Mayo Clinic states:

UTIs may be overlooked or mistaken for other conditions in older adults.


The US website “Healthline” states:

“A UTI can cause confusion and other symptoms of dementia in older adults. Taking preventive steps and looking out for UTI symptoms should help prevent infection. If your doctor diagnoses a UTI early, your outlook is good.”

in its article Urinary Tract Infections (UTIs) in Older Adults

and the UK Alzheimer’s Society has an informative leaflet

It is all to easy for a Doctor to reach for a prescription pad and prescribe Antipsychotics when a simple Urine Dip Test will show a probable UTI


Treating the causes of the Emotional Responses of Dementia (ERD) upholds our rights under the UN CRPD.

Treating the causes of the Behavioural and Psychological Symptoms of Dementia (BPSD) abuses our rights under the UN CRPD.





Behaviour Change Ahead? – Use of the Term Behaviour

Wherever you go, whatever you read, see or hear you may find the term behaviour in relation to Dementia.

Behaviour is a negative term, part of the medical model of healthcare, that makes people living with Dementia sound like naughty children and may lead to the pathway of BPSD, the Behavioural and Psychological Symptoms of Dementia and the abuse of their rights.

Terms such as:

Behaviour changes

Challenging behaviour

Aggressive behaviour

Inappropriate behaviour


Because of so called behaviours, frontline Healthcare labels the person with BPSD, reaches for the prescription pad and sends them down a pathway to chemical/physical restraint, sectioning/safeguarding and involuntary care.

I was travelling home by train the others day and I overheard a comment

“their emotions got the better of them”

which got me thinking.

If someone you care for lets their emotions get the better of them, would you label it as behaviour reader or would you consider

what has happened

why it has happened

what has caused the person to react that way

is there a way to avoid that happening again

Alternatively, emotions could be seen as a term for the social model of healthcare

So, when a person with Dementia “lets their emotions got the better of them” ask the questions

what has happened

why it has happened

what has caused the person to react that way

is there something we can do to help

Is it pain, UTI, constipation, are they hot cold, strange environment or what may be over 100 causes.

If you deal with the cause, then maybe you will deal with the emotions, reducing chemical restraint, institutionalisation, reducing the costs to healthcare and the abuses of people living with Dementia.

So reach for the prescription pad, treat the causes and prescribe support, services, assessments, rehabilitation and also activities.

Some doctors now prescribe activities, they can be seen on MAR charts in a few care homes. Things like music, arts, dancing, poetry, things that are appropriate and engage a person living with Dementia.

It’s referred to as enablement.

Whilst medication is a valid treatment for some people living with Dementia as with any chronic terminal disease, only when a proper assessment is done and all avenues have been followed to treat the causes, should medication be used.

Maybe it is time to change the label and move from the negative language of behaviour to a more positive term such as Emotion.


Responding Mindfully to Emotional Turmoil

World Alzheimer’s Month – Take off the blindfolds and BanBPSD: An open letter to the worldwide Dementia community

Today’s re-blog as part of World Alzheimer’s Month focuses on an article by Susan Macaulay which comments on an open letter to the worldwide Dementia community.

“Labelling the reasonable responses of PLWD as symptoms of dementia may be good for the bottom line of pharmaceutical companies, but it’s harmful to PLWD and their carers. It causes care partners, care workers, and medical personnel to misinterpret the actions of PLWD, which in turn causes dementia carers to fail to look for, and therefore identify the true causes of distress in PLWD, as well as to inappropriately use antipsychotics and physical restraints that are counterproductive and largely ineffective in addressing the issue.”

Take off the blindfolds and #BanBPSD: an open letter to the worldwide dementia community

In closing this series of blogs for World Alzheimer’s Month, I will leave it to a blog by Wendy Mitchell, aptly titled “Clearly we have much still to do…”

“That’s why I believe it must be so hard for those supporters to hear about us surviving each day as we do when their loved ones have declined quickly. It doesn’t make sense to them because their experience is very different.”

Clearly we have much still to do…

World Alzheimer’s Month – 101 potential causes of behaviour by people living with Dementia that institutional care staff may find challenging

Today’s re-blog as part of World Alzheimer’s Month focuses on an article by Susan Macaulay which comments on 101 potential causes of behaviour by people living with Dementia that institutional care staff may find challenging.

“While researching my second JAMDA article, I came across a relatively recent paper by Dr. Jiska Cohen-Mansfield on the causes of discomfort in people who live with dementia in long-term care facilities. Cohen-Mansfield and her team developed a Sources of Discomfort Scale (SODS), as part of a larger study for the “Treatment Routes for Exploring Agitation” (TREA).”

World Alzheimer’s Month – Dementia not the cause in majority of harmful resident-on-resident interactions

Today’s re-blog as part of World Alzheimer’s Month focuses on an article by Susan Macaulay which comments on Dementia not the cause in majority of harmful resident-on-resident interactions.

“It is important to emphasize that the vast majority of harmful resident-to-resident interactions that involve people who live with dementia in long-term care homes are the result of negative and distressing factors in the social (i.e. other people) and physical environment. In most situations, unmet human needs, situational frustrations, and perceived and real threats contribute or directly cause these behavioral expressions.

These social and physical environmental factors and unmet needs intersect with the person’s cognitive disability to generate the episodes. Most elders with dementia are not inherently aggressive. Like us, they react, respond, defend, and protect themselves when they experience distress, and when they sense that their dignity, privacy, identity, and personhood are threatened.”

Dementia not the cause in majority of harmful resident-on-resident interactions

Ban BPSD – In The News – August 2018

Why are nursing homes drugging dementia patients without their consent?

UTIs Cause Unusual Behavioural Symptoms in Elders

Aged-care homes’ drug use slammed as ‘elder abuse’

Appropriate Medication is a Key Element of High Quality Aged Care

Non-drug approaches lead to ‘massive decreases’ in BPSD

Survey reveals that 61 per cent of aged care residents are being given psychiatric drugs every day

Man creates jelly ‘sweets’ to help his granny with dementia stay hydrated

Pain and delirium in people with dementia in the acute general hospital setting

Peak body says appropriate use of drugs ‘must continue to be a focus’

Challenging behaviour, BPSD and stress and distress: Potato, Po-ta-toe?

People wit Dementia have Other Health Issues Too…

World Health Organisation Adopts Global Action Plan on Dementia

Reinvesting in life is the best prescription


The Campaign to Ban BPSD

The Campaign to ban the medical model of BPSD, the Behavioural and Psychological Symptoms of Dementia, raises awareness of the need to move from the medical model of Dementia care to the social model, moving from treating the symptoms to treating the cause.

It looks for new and innovative approaches to Dementia and aged care philosophies and practices.

Removing the medical model, removes the pathway to chemical and physical restraint, sectioning, involuntary care and segregation, which leads to disengagement.

It also removes the stigmatising label of BPSD and moves to compassionate care based on Human Rights, including The United Nations Convention on the Rights of Persons with Disabilities (CRPD)

Embracing the social model leads to a pathway that looks at the individual and treats the causes and symptoms, through things like assessments and interventions, treating the symptoms and unmet needs by providing support, services and coping strategies, enabling the person to be engaged with life and their carer/family live within their community, reduce stigma and reduce Hospital admissions for as long as possible.

In saying all of this, I do understand that prescribing Risperidone, which is the only anti-psychotic medication licensed in the UK for Dementia, may benefit some with any chronic terminal disease, however, imagine the outcry if all the support and services were removed and a similar pathway to BPSD was applied to people living with cancer.

It should not be seen as the treatment of choice for professionals, rather coming at the end of a list of assessments to see if other interventions and coping strategies may benefit the person and their carer/family.

For too long, healthcare systems worldwide have used the medical model of healthcare to treat the symptoms for the benefit of big pharma and to the detriment of the person, rather than assess the causes and deal with them.

The number of people involved in this campaign is growing worldwide and as the number grows, so does it’s voice and I am proud to be involved myself.


Open Letter to Gabriella Rogers and Channel 9, Australia

Behavioural and Psychological Symptoms of Dementia (BPSD) – What Is It

Behavioural and Psychological Symptoms of Dementia (BPSD) – Why Ban It

Behavioural and Psychological Symptoms of Dementia (BPSD) – Why Ban It

Following on from yesterdays article Behavioural and Psychological Symptoms of Dementia (BPSD) – What Is It, this article moves on to the medical model of BPSD and why it should be banned.

Let me state from the outset reader, that the campaign to Ban BPSD in no way advocates the complete removal of antipsychotics.

As with any other chronic terminal disease they do have a place but the campaign wants to see healthcare systems move from the medical model which on further reading you will see that it abuses the person with Dementia and ignores their human rights, to the social model that treats the causes.

Currently, healthcare systems follow the medical model of BPSD which leads to the pathway of Chemical Restraint, Deprivation of Liberty and Involuntary Care.

The medical model treats the symptoms of BPSD usually by Chemical Restraint which leads to increase clusters of behaviours associated Dementia.

During nearly 20 years working in healthcare I saw many people living with Dementia given 0.5mg of Haloperidol/Haldol only for the person to disappear within 48 hours, unable to do the basic activities of daily living (ADLs), the person and quality of life gone.

The NICE/SCIE guideline “Antipsychotics in people with Dementia”                                   Last updated : 

“Advises against the use of any antipsychotics for non-cognitive symptoms or challenging behaviour of dementia unless the person is severely distressed or there is an immediate risk of harm to them or others. Any use of antipsychotics should include a full discussion with the person and carers about the possible benefits and risks of treatment.

In the May 2012 edition of Drug Safety Update, the MHRA advised that no antipsychotic (with the exception of risperidone in some circumstances) is licensed in the UK for treating behavioural and psychological symptoms of dementia. However, antipsychotics are often prescribed off-label for this purpose.”

Many pathways advocate reducing Polypharmacy that may contribute to BPSD but they do not advocate replacing them with alternatives. Polypharmacy refers to a person taking 5 or more different types of medication, surely ready they wouldn’t have been prescribed if they weren’t needed.

Removing medications without replacement may cause clusters of BPSD because symptoms of a pre-existing condition return causing distress to the person.

A social model  is concerned with treating the causes of behaviours, reducing the need for Chemical Restraint, Deprivation of Liberty and Involuntary Care. It enables  people to continue to live with their Dementia’s for longer, reducing the need for safeguarding, involuntary care, being moved to a Care Home and respects the persons rights to live their life without restraint.

A lot of pathways include the different types of Mental State Examinations and Cognitive Assessments which are subjective tests that only provide a snapshot of a moment in time and are subject to variations based on the time of day, and many of the causes of BPSD.

Some of the potential causes of behaviours in Dementia are:

  • Urinary Tract Infection (UTI)
  • Constipation
  • Hot/Cold
  • Pain
  • Noise
  • Environment
  • Not Recognising People/Places
  • Hunger/Thirst
  • Fear
  • Apathy
  • Regressing to a Different Time
  • Boredom/Loneliness
  • Lack of Meaningful Activities

which require proper assessment and treatment/strategies rather than antipsychotic medication.

Alzheimer’s Association : Challenging Behaviours

“Following representations by Dementia Alliance International and Alzheimer’s Disease International, the CRPD Committee has responded to our joint request to make it clear to Member States that persons with dementia and their care partners are fully included in the implementation of the CRPD on the same basis as those with other disabilities.

In 2017, dementia has been specifically mentioned in the review process on Canada and in a Parallel Report submitted by Disability Rights UK in the ongoing review of the UK government. Dementia is now described in UN documents as a cognitive disability.

The use of the model of BPSD, can be a treatment of convenience that makes it easier to care for a person with Dementia but it’s effect is the removal of the person, their quality of life and their rights.

Using a social model to treat the causes/symptoms of Dementia can empower the person living with Dementia, retain the person and uphold their rights..

Dementia isn’t a mental health condition, it is a cognitive disability. Dementia is an umbrella term for over 100 chronic terminal neurological diseases which have a physical cause.

Obviously, as with any chronic terminal disease, there will be a minority that may require the intervention of a mental health professional and possibly pharmacological interventions during their journey with their disease but only after treating the causes of behaviours to improve their quality of life, using the social model, has failed.

The social model should recognise Dementia as a cognitive disability and begin at the point of diagnosis with state funded, inclusive rights based post-diagnosis support and services which continue along their journey with Dementia, regardless of age at diagnosis and in line with the UN Declaration of Human Rights and the Convention on the Rights of Persons with Disabilities (CRPD).

Further comment will be tomorrow in my Sunday Musings

I’ll leave you reader with

Leah Bisiani, MHlthSc, Dip Bus, dementia and aged care consultant, RN.1
Kate Swaffer, human rights activist, author, MSc dementia care, PhD candidate
Daniella Greenwood, consultant, author, speaker, activist
Dr Chris Alderman, B Pharm, PhD, FSHP, BCPP, CGP
Dr Al Power, Geriatrician, author, educator
Susan Macaulay, care partner, author, dementia advocate

who write an Open Letter to Gabriella Rogers and Channel 9, Australia


Beyond the Medical Model: The Culture Change Revolution in Long-Term Care

The social model of disability

Dementia, rights, and the social model of disability

Care planning, involvement and person-centred care

The NICE/SCIE guideline “Antipsychotics in people with Dementia


What is Polypharmacy ?

NHS Scotland : Stopping Antipsychotics in Patients with Dementia

Safe Prescribing in Dementia

Alzheimer’s Association : Challenging Behaviours


Behavioural and Psychological Symptoms of Dementia (BPSD) – What Is It

BPSD stands for Behavioural and Psychological Symptoms of Dementia.

BPSD refers to the non_cognitive symptoms of Dementia, particularly in the middle and later stages.

It is estimated that up to 90% of people with dementia will experience Behavioural and Psychological Symptoms of Dementia (BPSD) at some time during their journey with Dementia.

Behaviours may result from any combination of neurodegenerative damage associated with the disease itself, unmet physical needs such as pain or discomfort, the environment they are currently in and unmet psychosocial needs, such as the need for meaningful human contact or fear.

Some examples of the BPSD are:

  • repetitive behaviour;
  • mood disturbance (e.g. depression);
  • social inappropriateness;
  • agitation;
  • wandering;
  • psychosis, which may include delusions (false beliefs) and hallucinations (seeing or hearing things that are not actually there);
  • physical aggression; and
  • sleep disturbance.

Commonly, BPSD is treated using the medical model that leads to a pathway of Chemical Restraint, Sectioning and Involuntary Care.

As an example, the model will suggest treating pain but does not mention that something as simple CoCodamol which may exacerbate BPSD by causing constipation thereby causing a cluster of symptoms which will eventually lead down the BPSD pathway.

It may also suggest reducing existing medications, well surely reader you wouldn’t be on any medication that was not needed. If any of my medications were stopped and not replaced by something that wouldn’t have a negative impact on BPSD, in time they could lead to the appearance of a cluster of BPSD symptoms and other medical problems moving on to sectioning and involuntary care.

There doesn’t seem to be any general recognition of environment in any of this either. If assessments for BPSD are done outside the home environment, any number of factors could lead to the appearance of BPSD.

The British Medical Journal article Behavioural and Psychological Symptoms of Dementia (BPSD) . The issue is the cause not the cure goes some way to pointing to environment as a cause.

Below is a summary of seven of the most common deficits seen in dementia that are most clearly linked to specific regions of the brain.

These are known as the 7 A’s:

1. Anosognosia – lack of insight into one’s deficits or illness attributable to temporo-parietal pathology.

2. Amnesia – loss of short-term and long-term memory due to pathology in the hippocampus and/or the temporal lobe. Short-term memory loss causes difficulty learning new information; long-term memory loss causes difficulty recalling
previously learned information and occurs in reverse order to the memory storage process (i.e. loss progresses from most recent to most remote).

3. Aphasia – loss of language expression or comprehension. In expressive aphasia (due to damage of Broca’s area of the frontal lobe), the individual may be able to comprehend speech, but is unable to express him or herself. In contrast, a person with receptive aphasia (due to damage of Wernicke’s area of the temporal/parietal lobe) may be able to express him or herself, but has impaired comprehension.
4. Agnosia – loss of ability to recognize people (including self), objects, or sounds despite intact sensory modalities of vision, touch, and hearing. The damaged area is the parietal lobe.
5. Apraxia – an inability to execute or carry out learned purposeful movements, despite having the desire and the physical ability to perform them, due to impaired motor planning and sequencing processes controlled by the parietal lobe.
6. Altered perceptions – altered depth perception, visual distortions, and altered tactile perception are commonly seen in dementia due to damage to the parietal lobe.
7. Apathy – an inability to initiate activities or conversation due to damage in the
frontal lobe.

…any of which may contribute to BPSD.

The broken lens of BPSD: why we need to rethink the way we label the behaviour of people who live with Alzheimer’s Disease

Polypharmacy which refers to the use of a large number of medications, commonly considered to be the use of five or more. Since polypharmacy is a consequence of having several underlying medical conditions, it is much more common in elderly patients and may be another cause of BPSD.

However, as an example, Primary Care in Ireland Definition , Assessment of a person with BPSD may be one of the better medical models however in their Medication Review they talk about stopping some treatments not replacing with other more suitable treatments, for example, Digoxin but not what to replace it with, which again could cause the appearance of a cluster of BPSD symptoms and other medical problems.

Kate Swaffer CEO of Dementia Alliance International recently wrote an article

Rethinking Dementia Care: Ban BPSD

Tomorrow reader, I will go on to give my opinion about why we should ban the medical model of BPSD in favour of a social model that retains empowers person and uphold the rights of a person living with Dementia.

However reader, the campaign to Ban BPSD does not advocate the complete removal of the use of antipsychotics in the treatment of Dementia, rather the ban on their inappropriate use which abuses the person and their rights.

Behavioural and Psychological Symptoms of Dementia (BPSD) – Why Ban It



#Ban BPSD – 10 barriers to reducing Antipsychotics for Dementia

Today’s article in relation to the Campaign to Ban BPSD is Susan Macaulay’s article about the 10 Barriers to reducing Antipsychotics for Dementia.

“These drugs are dangerous. They are largely ineffective in treating dementia-related responsive behaviour. Their use is not recommended in elderly people with dementia. They produce debilitating side effects, and in some cases premature death. There are better, more effective, less risky, proven ways to achieve the desired results.”

10 Barriers to reducing Antipsychotics for Dementia