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Dementia refers to over 70 diseases that cause symptoms resulting in a progressive deterioration of brain cells, particularly those responsible for thinking and memory. The cause is often unknown, and in most cases a cure is not available. Dementias, particularly Alzheimer Disease, result in impaired function in all aspects of daily living and interpersonal relationships.

The number of people living with dementia and mental health challenges appears to be increasing – and challenging or responsive behaviours are common. If you family member is experiencing challenging behaviours, you are not alone. A recent Canadian report suggested that 70 percent of people with dementia or mental health issues have some degree of challenging or responsive behaviours.

Responsive behaviours are not simply aggression – they are self-protective, defensive or communicative strategies that a person uses to respond to something negative, frustrating, frightening or confusing in his/her physical or psychosocial environment. People with dementia cannot communicate their concerns in the usual ways acceptable to society – so their behaviour becomes the way they communicate feelings. Threats that they feel can be real or perceived – but the threats are always something that the person does not understand. Responsive behaviour is the person’s attempt to exert control, protect or defend him/herself in his/her world as he/she knows it.

In this way, responsive behaviour places the reasons or “triggers” for the challenging behaviours outside, rather than within, the individual. Therefore, it is up to caregivers and family members to work together to “figure out” what the reason for the behaviour is and “fix” the reason not the person. Effectively managing responsive behaviour recognizes that problems in the social or physical environment can be addressed and changed – but everyone needs to “be on the same team” and work together to accurately assess and strategize effectively change the behaviours, to ensure safety and comfort both for the person and for others around him/her.

It is important for you to realize that your family member is not reacting deliberately to you in an aggressive manner through responsive behaviours – it is also important to realize that all of your family member’s behaviour has meaning – we need to work together to assist the person by addressing the meaning behind the behaviour, reducing the frequency & disruptiveness of the challenging behaviour and developing strategies to reduce its occurrence.

Toronto Long-Term Care Homes and Services has information available to assist families in understanding how they can help.

Sometimes, when families do not understand challenging or responsive behaviours, they are embarrassed and distance themselves from the person – or feel that they should let staff “take over”. This leads to emotional distancing and the severing of important relationships with family and friends – and this can cause further anguish and frustration for the person with dementia. Toronto Long-Term Care Homes and Services advocates and promotes strong collaboration with families and friends to provide effective care and the best possible quality of life.

We have adopted the Gentlecare™ approach for dementia care because we agree with its goals: to accommodate and support existing levels of function and development, rather than challenging the person with dementia to adapt and perform in ways no longer possible.

The philosophy of Gentlecare™ is that every person with dementia is a unique and special human being. People with dementia need people, programs and physical space to be sensitive and supportive, instead of challenging their dementia-related dysfunction. Gentlecare™ introduces the notion of compensating for the deficits of dementia by modifying the approach of people, programs and physical space to support the individual's values, strengths, desires and needs.

Through our dementia care approach, we try to achieve:

• increased function for the individual;
• reduced episodes of responsive behaviour;
• decreased family and staff stress; and
• increased community involvement and commitment.

Assessment is Key

We know there is a direct correlation between the disease pathology and behaviour. Through comprehensive assessment, we develop care plans that help support the person as an individual, respecting "who they are" and "who they were." We encourage the use of life stories and memory boxes, so that staff know the person behind the dementia. Accurate assessment and care plan strategies create powerful opportunities to support and enable residents to be the best they can be. We focus on developing care plans that build on the person’s abilities – and we work with families to identify strategies that have worked for them in the past, so they become part of care.

We're working in the Residents' Home

Each interaction requires a consistent approach that enhances the person's self-esteem and promotes trust and security. The care team embraces the attitude and philosophy that they are working in the residents' home. For example, care team members engage in conversation with residents, ask for their opinions and respect their moods. Public address announcements are minimized, as sudden, loud or intrusive noises may frighten or disorient. Residents are not awakened early by staff and may “wake up naturally” and enjoy a continental breakfast if they prefer one.

We understand the importance of friendly, supportive facial expressions and relaxed physical contact. We work hard to understand the behaviours and develop skill in re-directing the person when behaviours are escalating, as a means of reducing agitation and anxiety.

Physical Space

We know that it is better for the physical environment be simple and home-like, with therapeutic design features so that it can help enhance functioning and reduce fear, agitation and aggression.

We try to create an environment that feels “comfortable” – we develop “points of interest” – e.g. fish tanks, textured tapestry and encourage staff & families to use “theme boxes” to prompt comfortable discussion and activity. We know that positive family visiting is important – we suggest things like having “quiet time” – looking at photos, letters, etc. & reminiscing – working together to “tidy the house” – or simply taking a walk, while holding hands. We believe in Hush – no Rush and encourage families to ask for staff assistance and guidance as needed.

Programs

Our programs and activities are designed to be an integral part of daily life and to focus on self-care, communication, intimacy, relaxation, stress reduction, competency and former life roles. Gentlecare™ approaches include things such as:

• understanding that mobility and movement is important. – encouraging walking and providing safe walking paths (indoors and outdoors);
• avoiding unnecessary noise;
• being flexible – responding to mood changes;
• developing skill in re-directing;
• creating life-panels in partnership with families to provide insight into the “person behind the disease”;
• providing soothing sounds with tactile opportunities;
• normalizing activities such as tea towels to fold, brooms to sweep and dust cloths to use;
• providing light massage for relaxation with touch.

Benefits of Gentlecare™

There are many benefits to the Gentlecare™ model. They include:

• reduction in aggressive episodes
• improved level of functioning
• better self-esteem
• improved participation in self-care
• increased spontaneous socialization and communication
• less wandering
• reduced incontinence
• increased family involvement.

What we Know

• Good dementia care requires a collaborative model of care – linkages & partnerships are essential – so we welcome families as partners-in-care.
• Good dementia care uses a person-centred, compassionate and gentle persuasive approach, tailored to the individual’s circumstances.
• Quality of life for a person with dementia depends on the quality of the relationships he/she has with caregivers and families.
• Optimal care occurs when the environment is adapted to support the persons with dementia.
• Each person with dementia is unique, having a different constellation of abilities and need for support, which changes over time.
• Persons with dementia are able to experience joy, comfort, meaning and growth in their lives.

What can the family do?

Families play an integral role in the care of their loved one – and it is important to be as informed as possible so that you do not take the changes in behaviours personally.

Changes in behaviour are part of the disease, which also causes people to lose their inhibitions. Continue to be involved in the daily care of your family member. Help us understand what was important to your family member “before the disease”, including what they value and desire for quality of life. Use touch – things like hugs and hand holding – whenever possible in your communication, as persons with dementia are often isolated physically. Talk to staff about how care has been managed on any particular day to meet your family member’s unique needs. Let someone on the care team know right away if you are concerned about anything. Read our "Just for Families" publications and the many other varied resources available for learning.

For more information about Gentlecare™ visit the website at: www.gentlecare.com

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