Maintaining personal identity

What happens in everyday life can affect our sense of self. This is because identity is created and continued in social relationships. Even seemingly unimportant day-to-day contacts have important effects on our sense of who we are. Our self-identity (how we see ourselves) and our social identity (how others see us) can be uplifted, confirmed or undermined by what happens around us.

People with dementia are no different. Their sense of self is powerfully affected by how they experience their environment, and by the attitudes of others towards them.

Changes you can make now

Low cost

• Educate staff and family members about your commitment to person-centred care. Explain how you respect people with dementia and uphold each person’s dignity.
• Plant unique trees or shrubs with vibrant colours or unique scents at key points in outdoor areas to help wayfinding.
• Personalise bedrooms according to people’s wishes, reflecting a person’s unique style, life story and taste.
• Write a policy around sexuality to encourage a more open and thought out response by staff to sexual needs and wishes.

Moderate cost

• Have staff training on communicating with people with dementia, including the failure-free and no-expectation approach, use of background cues mostly during personal care, and consistent verbal and non-verbal cues.
• Start policies for staff autonomy and give staff time to solve problems according to a person’s bathing and eating wishes.
• Introduce personal grooming activities and have a dressing area with mirrors suitable for all people, standing or seated, ambulant or in wheelchairs.

High cost

• Fit handrails in passages, colour-contrasting to make walls and floors highly visible, have surfaces that keep noise levels down in dining areas, and have highly visible toilets for greatest independence.

Sense of self

Imagine a situation where you can no longer get the lid off a jar. Imagine feeling confused and embarrassed when someone half your age takes the lid off in a second.

Or imagine the effect of car horns beeping when it takes you six tries to back into a parking space.

Many people see dementia as gradual erosion of identity until there is no person left, but evidence does not support this. While many personal and social competencies reduce in a person with dementia, a person’s self carries on. People with dementia may have a reduced ability for spoken language, but they use unique styles of communication to get meaning across.

Staff need to:

• focus on a person’s positive attributes
• reduce embarrassment
• validate a person’s sense of self
• support how people wish to present themselves.

Mutual respect and cooperation let the self flourish, even in end stage dementia. Victoria'sCharter of Human Rights and Responsibilities Act 2006 promotes the freedom, respect, equality and dignity of all Victorians.

Advance care planning

Independence and autonomy

Supporting people’s sense of self

Quality of life is positively linked to certain building features about choice and control, community involvement, physical and cognitive support, comfort and personal care, and creating a sense of normality and authenticity. A narrow focus on health and safety in building design may create risk-averse environments but act against people’s quality of life.

As a social environment, all aspects of living in a residential facility, from personal care to communication, from breakfast to bedtime, from the garden to the dining room, can support a person’s sense of self.

Little things can make the biggest difference. Well-designed physical and social environments focusing on the quality of everyday life can help people continue in relationships that uphold a sense of identity and promote self-esteem.

Identity, roles and the importance of people’s life stories

Self identity is the outcome of social contact and feedback between personality, biography, physical health, neurological status and social psychology. Staff need to work with whatever view of self is put forward by a person with dementia.

We are generally defined by our roles: wife, father, doctor, plumber and so on. For people with dementia, major life roles usually disappear. But their past social roles are deeply tied in with their ongoing sense of self. For people living with dementia, their past social roles have great importance.

Comparing past and present identities of people with dementia shows different personal patterns: continuity, discontinuity and even change of self-identities. Some people create new, imaginary identities not based on past roles, and others strongly want to relive past social roles.

Information about the life story of a person with dementia is important because it helps staff to:

• see individuals, not just a disease
• give a person a proper social identity
• design daily living around past and present interests
• explain and deal with unmet need (sometimes called challenging behaviour).

Personal enjoyment: participation and engagement

Life stories

Spirituality and wellbeing

Meeting people's needs

Draw on people’s life stories to understand the needs they may be expressing.

For good personalised care, ask yourself some questions.

Who: what is the person’s name?

What: what is the person doing and what is happening close by?

Where: where is the person?

When: what time is it?

Why: why did the person act this way? (Briller et al., 2001)

Balancing safety and independence

While it is important to prevent people with cognitive impairment from wandering into possibly dangerous situations, it is reasonable for someone wanting to enjoy sunshine they see through a window or find something interesting to do outside the limits of a building.

Stopping people’s freedom of movement with locked doors and other restrictive practices does not help create a dementia-friendly environment. Work out why a person wants to leave and think of other ways to interest the person or make other experiences possible.

Physical design and social approaches need to support freedom of movement and choice in mobility while providing safety and security.

Gardens and outdoor spaces

Wanting to leave

Mobility

Mobility problems can be very frustrating for people used to being independent. They may not be able to take part in daily life activity, and may have long-term reduced comfort and sense of self. Encouraging people to be as mobile as possible supports independence and reduces irritation and anger. People with dementia often have the energy and desire to do more than is expected of them.

What can be done?

• Use landmarks and cues to help people find their way around.
• Reduce noise levels.
• Reduce a person’s fear of falling.
• Have well-lit areas.
• Use effective colour and tonal contrasts in inside and outside spaces.
• Clearly define walls from floors.
• Fit highly visible handrails.
• Use suitable patterns and fabrics for walls and furnishings.

Surfaces: strategies for floors, walls and ceilings

Wayfinding

Example - outdoor pathway

This photo shows a younger and older man walking together on a level garden path in a pleasant outdoor environment. Encourage people to be as mobile as possible, to support independence and reduce feelings of frustration. People with dementia often have the energy and desire to do more than is expected of them.

Check if your facility supports mobility, and ask how the physical and social environment might be better designed to do so.

A clear path to the destination and sufficient cues and landmarks for identification are important in enhancing orientation in the environment (Brawley, 1997).

Example - hallway handrail

The photo shows a wooden, rounded handrail in a corridor. The handrail helps people to walk and reduces fear of failing. The handrail’s round edge assists safety and is comfortable to hold, and the rail is easy to see, contrasting in colour with the wall, floor and doorway.

Communication

Changes to memory and intellect affect communication as dementia continues. Appropriate communication helps people express and meet their needs and wishes.

Communication should be ‘failure-free’. A ‘no expectations’ approach to communicating with cognitively impaired people lets them respond in their own way. This means they are reassured, accepted and recognised by others.

Once you know a person’s life story:

• Talk to them rather than about them to others.
• Tell them what you are doing or going to do
• Focus attention on the person at all times.

Caregivers can improve communication if they adjust their language, speech and non-verbal cues and their perception of people’s capacities (Orange and Colton-Hudson 1998).

Use approaches that open pathways of communication. For example, introduce yourself, keep eye contact, use pictures and photos to communicate; keep sentences short and simple with longer pauses between one topic and the next; give time for responses, use words of encouragement; check your non-verbal communications support what you are saying.

Communication strategies

Personal care: how to communicate

Maintaining dignity

Independence around personal care is often the first thing lost when a person moves into a residential facility. People most want to keep their independence in bathing, toileting, dressing and grooming. To protect a person’s dignity, staff need to reduce embarrassment, respect privacy and promote a person’s sense of self.

Bathing

The bathroom is a focus for the relationship between built environment and philosophy of care. Poor communication is a key issue in bathing. The biggest problem, creating fear and confusion for people with dementia and problems for staff, is poorly lit, noisy, institutional-style bathrooms.

Bathrooms and bathing

Person-centred care

Personal care: how to communicate

Toileting and continence

Unless a person has a pre-existing physiological cause for incontinence, most people with dementia should be continent. Issues in respite and residential care can affect continence and should be checked.

Continence checklist

Dressing

Think about dressing in three stages: choosing clothes, arranging them in order, and the task of dressing. Successful approaches to dressing include good communication, paying attention to the person, understanding their likes and needs, and careful physical design.

Bedrooms: privacy and personalisation

Dressing

Sexual identity

Sexuality is central to self-identity and wellbeing, and research suggests sexuality is important to a large number of older people. Practice often ignores the sexual needs, interests and rights of older people. People with dementia who express their sexuality tend to be mentioned in biomedical debates and seen as problematic rather than as having normal human needs.

Feelings, behaviours and actions connected to sex and sexuality can worry staff and family members. Issues can arise for some people around unwanted physical contact. But sexual activity is normal, and settings and arrangements for appropriate sexual expression should be thought about.

Privacy should be respected and policies made for a positive approach to sexuality. Be discrete when sharing information with colleagues about an older person’s sexuality or intimacy needs. Two key questions to ask before sharing such information are: Do I need to document this? Do I need to tell my colleagues about this? These questions help avoid needless disclosures and uphold an older person’s dignity and privacy.

The photo shows the hands of two older people. It demonstrates intimacy and comfort between the two people. Staff and management should consider settings and arrangements for appropriate sexual expression for people with dementia.

Sexuality

Case study - Allawah Lodge

Allawah Lodge Aged Persons Hostel, Yarrawonga, has many features of a dementia-friendly environment.

• Life stories are recorded and background information is gathered for each person when they come to Allawah. Personal life stories include a family tree and leisure assessment, with previous, current and possible future interests, likes and dislikes recorded.
• A joint program for people with dementia and the community has activities at the facility, an adjoining community centre and at different community venues. Activities include cards, bingo, fortnightly hairdresser visits, guest speakers, visits by schoolchildren, craft, outings, reminiscing and high tea. People with dementia are helped at events and monthly association meetings outside.
• A men’s group, comprising people with dementia and people from the local community, meets regularly.
• The Lodge has a lounge area with kitchenette designed for comfort and the privacy of family gatherings. A sun room can be booked for activities and gatherings by families and organisations.
• People with dementia and residents’ representatives help make decisions about lifestyle choices, such as meals and when to get up or go to bed. People with dementia can attend breakfast in dressing gowns and slippers if they want to.
• People with sensory loss can access large print books, talking books and a mobile library.

Issues to consider

• Poor understanding of people’s feelings and reactions
• Environmental features restricting independence
• Institutional beliefs preventing person-centred care
• Unsuitable and/or not enough social contact

Lived experience

Why are they treating me this way? I hate that mirror! I don’t know that wrinkled face with vacant eyes staring back at me. In my mind I have wavy black hair, clear skin and eyes bright with the excitement of life. I parted my hair on the right — this person has her hair pulled up like a baby and tied with a ribbon. The nurse says it’s me. Silly girl!I used to love my weekly bath even though I had to use the water after all my older sisters had been in it. The prison guards are coming now … they drag me kicking and screaming to the shower. Ahhhh … I scream, the water is too hot. It’s burning. They rub a rough cloth over my private parts and then my face. Mother always said wash your face first. The indignity! I must get out … I hit them and grab at their hair. I won’t let go till they let me out of here. I scream for help. They scream I am wetting them … Then I see that mad face in the mirror again. Why IS she spying on me? The floor is wet and slippery. Help, they’re dragging me back into the shower, help!

Research says ...

• Often the most ordinary activities strengthen identity and independence.
• Dressing, bathing, grooming and dining can be the most personally meaningful, purposeful and comforting life activities.Satisfaction about personal looks is linked to wellbeing and self-esteem.
• The need for help impacts on how people feel about themselves.
• Some forms of help invade personal space and undermine dignity.
• Helping someone keep their self identity can be hard because of the diversity of people in residential and respite facilities.
• Appropriate communication is basic to keeping self-identity.
• Making the most of someone’s capacity goes beyond ability to be independent.
• Independence is about what matters to a person: how they feel is just as important as physical independence.
• People with dementia often have the energy and desire to do more than is expected of them.
• Dementia-friendly environments empower people, showing the world individuals rather than a disease.