Caregiving and dementia/Topics/Behavioural and psychological symptoms

This page describes a Dementia Training Study Centre National Priority Area.

This NPA focuses on dealing with behavioural and psychological symptoms of dementia and responding to unmet needs.

Overview

Behavioural and psychological symptoms of dementia (BPSD), in the context of health care, generally refers to strategies to manage the consequences of unwanted psychological states and behaviour that can result from cognitive deterioration.

Responding to unmet needs is a less commonly used term that emphasises a person centred approach to care and understanding of the person with dementia. This approach suggests that behavioural and psychological symptoms can be better understood and managed by responding to the underlying unmet needs of the person with dementia rather than just by treating of symptoms.

Responding to unmet needs

Cover of the IFA monthly journal Global Ageing 8.1

The term "Behavioural and Psychological Symptoms of Dementia" (BPSD) has been in use by many scholars and health professionals and probably will continue to be used for quite some time. It carries a connotation that a person with dementia is displaying behaviours that are challenging and need managing. In a narrow sense that is correct, but the terminology does not capture the full picture of what is going on for the person with dementia. A more objective view suggests that the person with dementia may have communication problems, particularly in verbalising his/her concerns or needs (Ward & Vass, 2008). This may result in expressions of fear, pain or loneliness, for example, that look like verbal or physical aggression. The person-centred approach advocates taking the time to know the person, his/her history, health problems, likes and dislikes, retained abilities, social connections and importantly, to respect the person's wishes (Kitwood, 1997).

This of course takes more time initially. But studies have shown that this approach, if implemented in a genuine way, is far more satisfying for the person with dementia and health professionals providing care and actually saves time and energy for everyone (Nay et al., 2009).

Remembering a few important things about dementia will help caregivers as they interact with their care partners (i.e., people with dementia). There are different types of dementia which exert different effects on the brain.

• Dementia is a loss of brain function that may affect memory, thinking, language, planning and reasoning, social skills and emotional reactions (U.S. National Library of Medicine).
• All types of dementia are associated with a progressive breakdown or death of neurons or nerve cells in the brain. It may take years for symptoms to develop but the illness progresses over time.
• The nature and location of the death of neurons varies with the different type of dementia. Therefore the symptoms of dementia may vary according to the area of brain affected and the progress of the condition. See more information about types of dementia.
• The behavioural and psychological symptoms associated with dementia are not a deliberate attempt by the person to upset others.

With changes to the physiology of the brain, the person with dementia may begin to experience communication problems, such as word finding difficulties, speaking fluently but not making sense (jumbling words), problems understanding what people are saying, especially if they talk too quickly, declining writing skills (although reading skills may be preserved well into the illness), loss of awareness of social skills (e.g., Interrupting or ignoring a speaker and difficulty expressing emotions) (Alzheimer's Australia, 2011).

Along with these difficulties, the person may experience difficulty voicing their needs, confusion about their daily schedule, and social isolation due to changes in friendships.

As many of these behaviours can be traced back to communication problems, such as the person being unable to express physical or emotional needs, a few practical strategies for assisting people with dementia are outlined here, based on Ward and Vass et al. (2008).   When assisting a person with dementia:

• Before addressing the person, approach them from the front, smile, and make eye contact
• Minimise background noise (e.g., radio or TV by pointing at the appliance and asking, "May I turn this down for a moment?")
• Identify yourself and use the person’s name (respectfully).
• Speak in a clear voice with calm tone; no need to shout
• Keep your sentences short, focusing on one idea at a time.
• If you need to repeat something, say it in a clear, calm voice. Allow plenty of time for what you have said to be understood.
• If the person is speaking, give them time to complete their sentence. Smiling and nodding while remaining silent can give them time to think and respond.
• It can be helpful to use orienting names (e.g., ‘Your son David is ...........’).
• Hand gestures can supplement the spoken word (e.g., pointing to the dining room or area down the hallway as your destination)
• Using signs (e.g., toilet symbol on door) as well as words may help the person identify what they want
• Consider using ‘validation’ rather than ‘reality orientation’. For example, if the person expresses concern about needing to leave to prepare dinner for their schoolchildren (who have now grown up and have their own children or grandchildren), perhaps find a way to reassure them without pointing out they are elderly and incapable of making dinner. Look for the unmet need behind the concern: It is normal after many years of doing an activity,to want to keep our routine, so finding some useful, social activity may fill that need at that time of day.
• If possible, maintain the person’s routine as much as possible (e.g.. if they showered in the middle of the day, keep that routine. If they liked to go for a walk of an afternoon, take them for a walk or if safe for them to walk alone let them enjoy the garden in their own company or the company of other residents.

It is important to remember that the person with dementia retains his/her feelings even though they may not understand what is being said. So maintain their dignity and self-esteem as you would like for yourself. Your approach when assisting the person with dementia will have a great influence on the effectiveness and quality of their care (Time for Dementia, 2012).

Background and Context of BPSD

There is a wealth of information available about BPSD on the Alzheimer's Australia website under ‘Understanding Dementia and Memory Loss’ and click on Help Sheets, Update Sheets and Tip Sheets. The following points are based on the Changed Behaviours and Dementia section.

There are several factors that influence why we perceive a behaviour as a problem, including the dysfunction, context, and our own response. With regard to the dysfunction, it is important to realise these symptoms are not under the person’s control. Things like:

• Comorbid illness such as a delirium caused by infection, dehydration, constipation or drug side effect. Delirium can look like dementia, but it has a relatively rapid onset and the condition can be reversed if the cause of the delirium is addressed.
• Misidentifications of people, places, objects or even self
• Delusions such as believing one’s belongings are being stolen
• Hallucinations (seeing people or objects that are not real)
• Mood symptoms (depression, anxiety, euphoria, apathy)
• Disorders of ‘neurovegetative’ function (sleep, appetite, sexual expression)
• Aggression towards others or self-harm
• Disruptive vocalisations (such as calling out/screaming/repetitive tapping that disturb others)
• Intense restlessness that leads to a fall and hip fracture in a resident with balance problems
• Wandering so persistent that the resident is unable to rest, or sit to eat. They may be trying to leave when it is not safe for them to do so, entering other people’s rooms or getting lost.

The situational context includes, for example:

• Features of the physical environment can influence our perception of the behaviour (e.g., a facility with a large garden may provide a diversion for a person who walks constantly versus a facility with few outside areas, making it appear the resident is ‘wandering the halls’)
• The person’s physical attributes (e.g., a frail resident is little threat to others if aggressive)
• Time of day (e.g., if the behaviour is happening at changeover of shifts when everyone is occupied, it can be inconvenient to stop and help the person)
• The perceived risk associated with the behaviour (e.g., refusing to take a multivitamin versus refusing to take insulin or an antiobiotic)

Our response to the person and the behaviour can worsen the situation. For example:

• Being hurried, over-efficient and task-focused while the person is struggling to comprehend what is going on.
• Being over-reactive and escalating a situation
• Using a negative emotional tone – sounding commanding or cold
• Watching and commenting about the person, instead of interacting with them
• Ignoring the person
• Laughing at the person
• Seeing the behaviour as the person

For more information, see the following Alzheimer's Australia presentation, Quality Dementia Care: A Guide to Practice in Residential Aged Care Facilities for all Staff on giving good quality care in a residential care setting.

A Model for Assessment of Unmet Needs

These tips have been gathered from the federally-funded Dementia Behaviour Management Advisory Service Resources website, page http://dbmas.org.au/Want_to_know_more_/Resources1.aspx

Essentials for Becoming a Skilled Observer of Behaviour. Take notice of -

• A = Antecedents (trigger) to challenging behaviours
• B = Behaviour that follows
• C = Consequences of the behaviour, and

• D = Detailed documentation and discussion

When did the behaviour first appear? Has it always been there or is this a recent development?

• Beginning last night or been there since they moved in six months ago?
• Acute onset could indicate a medical reason eg bladder infection causing delirium
• If it has followed the person from facility to facility you may need to adapt
• Determine what is the unmet need - Physical? Social? Environmental? Medical?

What Can You Do?

• Use Proactive strategies – be especially mindful of undiagnosed pain
• Attribute the behaviour to brain changes eg sensory loss, comprehension problems
• Be objective, see the behaviour as a form of communication
• Be the one to change first
• Understand the triggers
• Understand the approach that works best with the individual client
• Provide opportunities for the person to exercise control and choice in their life

Suggestions to Enhance Care Practice in a Residential Facility

• A staff member confers with the primary carer to identify the 5 best strategies staff can use to support the resident, assist in communicating needs and to reassure the client.
• Top 5 Strategies form is placed in the person’s file.
• To ensure personalized care, a discreet identifying label could be on the top of the bed to remind staff of the Top 5 Strategies.

A Model for Assessing Unmet Needs It is essential to understand a person’s needs and one way to gain this understanding is to use observation and records to see what is going on with the person. One model used by clinicians to guide this process is the ‘CAUSED’ model, standing for:

Communication – when considering challenging behaviours, it is often the case that the person is unable to understand what is happening or to express their needs, leading to frustration and contributing to agitated behaviour.

Activity – does an activity overstimulate the person, causing them agitation or conversely, are they understimulated, leading to boredom and self-stimulation such as calling out?

Unmet Need – remember that behaviour is a form of communication, so challenging behaviour is usually a sign of an unmet need. A common factor in challenging behaviour is undetected pain. So if a person has arthritis, osteoporosis or neuralgia, be aware of longterm pain that may be associated with these conditions.

Story (client’s) – knowing the person’s background or story can often give insight into their present attitudes, preferences or situation that has shaped the person as they are. Many older people of culturally diverse backgrounds may have experienced post-traumatic stress disorder as a result of war or violence. No matter what the person’s culture, it is important to provide culturally-sensitive care that shows respect for their values and beliefs.

Environment – the environment can be under- or over-stimulating, calming or upsetting, welcoming or hostile. See what can be done to make it welcoming and friendly.

Dementia – an illness that affects the client, but does not change the fact that they are a person with a sense of self, beliefs, values and a life history.

Research example

Dealing with the changes in cognition and behaviour that accompany the progression of dementia can prove to be challenging for both the person with dementia and their family carer. The behavioural and psychological symptoms of dementia (BPSD) can affect up to 90% of those with the condition (Robert, Verhey et al., 2005) and are responsible for much of the suffering experienced by those living with the illness. They can also have a major effect on the decision to go into institutional care. Two factors influencing this decision are:

1. The severity of the person’s symptoms
2. The corresponding ability of the carer to cope.

Bourgeois, Schulz, Burgio and Beach (2002) reported on a study where such factors were addressed. The first intervention group of carers were given training in improving patient behavioural and cognitive functioning. Behavioral training techniques including role play, feedback and observation were used to resolve real-life problems experienced by caregivers.

General principles of behaviour management include correcting sensory impairment, non-confrontation, optimal autonomy, simplification, structuring, multiple cueing, guiding and demonstration, reinforcement, limited choices, optimal stimulation, determining and using over-learned skills, minimising anxiety and using redirection (Zec & Burkett, 2008).

The second intervention group of carers were trained to modify their own psychosocial and emotional responses to caregiving challenges, to reduce their frustration, stress and dysfunctional thoughts; and to increase their physical relaxation, successful problem solving, and pleasant activities (Bourgeois et al., 2002). Specific strategies that have been shown to be successful include developing a daily schedule for the person with dementia, setting aside personal time, coordinating caregiving with others, attending a support group, obtaining individual counselling, hiring professional help, and considering an adult day respite program (Zec & Burkett, 2008).

The third group (control) received an attention placebo, that is, no active skills training but were able to talk to a supportive listener.

The study confirmed the usefulness of training carers in person-centred behavioural change. Carers were highly effective in decreasing problem behaviours, demonstrating maintenance of treatment gains over time. Furthermore, teaching carers to change their own responses to caregiving challenges was effective for the second group. Caregiver mood improved, and emotions such as anger, anxiety, perceived stress and depression decreased over the period of the study. The authors stressed the need to tailor training to the needs of the individual. For example, if the caregiver presents with a physical health risk from lack of exercise, depressed mood, and complaints about the repetitive verbal behavior of the patient, the treatment plan could include structured behavior programs for regular exercise, for increasing pleasant events, and for using a memory aid to reduce the person with dementia’s repetitive behaviour (Bourgeois et al., 2002).

Other researchers emphasise the 3 Rs of repeat, reassure and redirect as a basic strategy for behavioural management. Another widely used strategy is the ABC model (i.e., antecedents, behaviour and consequences) involves identifying the antecedent stimulus conditions and the consequences that may precipitate disruptive behavior so that the environment can be modified in line with the person’s needs (Zec & Burkitt, 2008).

Recently the ABC program Lateline presented a story on the misuse of antipsychotics, particularly in nursing homes, to control challenging behaviours of elderly residents . The story is confronting, and quite sad, and makes a very good argument for avoiding these drugs in the frail patient with dementia. The family members who give their stories, as well as the health professionals who are interviewed, provide salient evidence of harm in the overuse of inappropriate drugs and the benefit of finding alternative solutions. Several of the clinicians point out that taking the time to identify what is concerning the resident and implementing simple social or behavioural solutions works best. Therefore, this page about addressing challenging behaviours which usually turn out to be symptoms of unmet needs of the person with dementia, will continue to feature items that have a bearing on the topic.

References

Access Economics (2009). [http://apo.org.au/research/keeping-dementia-front-mind-incidence-and-prevalence-2009-2050 Keeping dementia front of mind: incidence and prevalence 2009-2050.

Alzheimer’s Australia (2011). [What is Dementia?]. Factsheet available from www.alzheimers.org.au

Australian Broadcasting Corportion, Lateline Program 16 August 2012. Families Count Cost of Dementia Drugs Prescriptions. Reporter: Margot O'Neill.

Bourgeois, M. S., Schulz, R., Burgio, L. D., & Beach, S. (2002). Skills training for spouses of patients with Alzheimer’s Disease: Outcomes of an intervention study. Journal of Clinical Geropsychology, 8 (1), 53-73.

Dementia Behaviour Management Advisory Service (DBMAS)Resources 2012. Available from DBMAS website

Kitwood, T. (1997). Dementia reconsidered: the person comes first (pp. 37-69). Buckingham: Oxford University Press.

Nay, R., Bird, M., Edvardsson, Fleming, R., & Hill, K. (2009). Person-centred care. In R. Nay & S. Garratt (Eds.), Older People: Issues and innovations in care (3rd ed). (pp. 107 – 119). Sydney: Churchill Livingstone/Elsevier

Robert, P., Verhey, F., Byrne, E., Hurt, C., De Deyn, P., Nobili, F., Riello, R., Rodriguez, G., Frisoni, G., Tsolaki, M., Kyriazopoulou, N., Bullock,R., Burns, A. & Vellas, B. (2005). Grouping for behavioural and psychological symptoms in dementia: Clinical and biological aspects. Consensus paper of the European Alzheimer disease consortium. European Psychiatry, 20, 490-496.

Victoria and Tasmania Dementia Training Study Centre (2012). Advancing Practice in the care of people with dementia. TIME for Dementia.

U.S. National Library of Medicine.

Ward, R., Vass, A. A., Aggarwal, N., Garfield, C. and Cybyk, B. (2008). A Different Story: Exploring patterns of communication in residential dementia care. Ageing and Society, 28(5), 629-651.

Zec, R. F. & Burkett, N. (2008). Non-pharmacological and pharmacological treatment of the cognitive and behavioural symptoms of Alzheimer Disease. NeuroRehabilitation, 23, 425-438.