Health
Department of Health and Human Services
Dementure

Dementia-Friendly Environments

Family and community

An open and inclusive environment | Encouraging family involvement | Organisational issues | Staff training | Connecting with the community | Changes you can make now

  • Promote family involvement and community links
  • Train staff in staff–family contacts
  • Understand family members’ roles and relationships
  • Give information and options to families to join in
  • Involve local businesses and organisations in facility activities and events
  • Renovate and design to support family and community involvement

Aged care facilities are often seen as places where the community can play a part, but people with dementia can play a part in the community!

Ongoing family involvement helps create and support dementia-friendly environments. Family members, often carers themselves, ‘know … the past person who happens to have dementia’ and can ‘interpret their future in relation to that knowledge’ Clarke 1997.

Moving into care should not mean stopping family life. Facilities should work out ways to support ongoing relationships between people with dementia and families. Family involvement in everyday life can improve a person’s quality of life by giving familiarity and a sense of security, and help keep links with the past. Without ongoing contact with family members, appropriate care can be difficult.

Community involvement in a facility can have great benefits. Many people enjoy ongoing involvement with community affairs, through joining in community activities or visits to the facility by community members. Community involvement in dementia facilities helps dispel misconceptions about life in residential care.

Common problems

  • Disrupted family ties for people with dementia
  • Lack of family-friendly organisational policies and procedures
  • Thinking people with dementia need to be protected from the outside world
  • Poorly designed facilities making family and community involvement hard
  • Misconceptions about residential care
  • Poor community understanding of living with dementia

An open and inclusive environment

Organisations and management practices can limit or assist staff–family relationships. In many facilities staff activities focus mainly on physical care, with families’ needs seen as secondary to ‘getting the work done’ Bauer 2006. In a dementia-friendly physical and social environment, staff work with families and help create an inclusive place.

It is easier for families to comfort, encourage and care for loved ones ‘if they feel comfortable and nurtured themselves’ Brawley. 2006. For family involvement, family and friends who come to visit need to feel at home.

A dementia-friendly environment is family-friendly, a place where children visit and families share everyday experiences.

Older woman holding babyFamily members often find it hard to place a loved one in residential or respite care. Many feel stress and a sense of loss or failure. Some do not understand how aged care facilities are run or know what to expect, and many find changes in their wife or mother, father or husband upsetting.

Staff need to be aware of how family members and friends may feel, and organisations need policies to build good family contact. Staff should work with families to meet a person’s needs and wishes, and pass on their observations of the person’s experiences.

Families need support and encouragement to be part of facility life. Make clear the roles, responsibilities and expectations of staff and family members, and help family members understand living with dementia.

 

Staff sharing their experiences of caring for a person, and giving emotional support and education to family members, have a positive impact on staff–family contacts. Overall, staff should see themselves as family allies. They can promote trust through positive, mutual communication, advice and feedback.

Research says:

  • Outcomes for people with dementia improve when families stay involved with their loved ones.
  • Family involvement can slow decline in people with Alzheimer’s disease and other dementias.
  • Families play an important role in long-term dementia care as they know the unique spiritual, ethnic and cultural background of the person with dementia.
  • Family carers are often seen by professionals as ‘hidden patients’, servants, visitors, health team members, partners-in-care, advocates, protectors, resources, a problem, intruders, disrupters or superseded carers.
  • It is not helpful to see the family as being in conflict or competition.
  • Relationships with family members are improved when staff value people’s uniqueness and person-centred care occurs.
  • Family members often want to have ongoing involvement in the physical care of their relative.
  • If family members can take part in what they see as positive ways, they may be more satisfied with the level of care.
  • As the population ages and residential care become a reality for more families, promoting quality of life through family involvement will become more important for staff.

Encouraging family involvement

From the start, family involvement in the care and wellbeing of a person with dementia should be supported rather than limited. Staff should build cooperative contacts with family members.

Hand holding cup
  • Give information when family and friends do not understand changes in a person.
  • Work out and use suitable communication methods with families and friends.
  • Encourage family members and friends to ask questions.
  • Educate family members and friends in communication methods to use when visiting, for example reminiscence and non-verbal communication.
  • Reassure family and friends their presence is important.
  • Explain the value of holding a hand, sitting with a person, listening to music and giving a person a hug.
  • Talk about what ongoing involvement family and friends would like to have, for example, help with personal care, enjoying past-times together, helping to create a person’s life story.
  • Give options for family members to help with physical care of their loved one, such as personal grooming, exercise and help with eating.
  • Be open, honest and approachable with family members.
  • Talk about and sort out any issues or problems families see as soon as they arise.
  • Be aware that families and people with dementia may not want to speak out for fear of being misunderstood or reprisal.

Organisational issues

Changes at organisational level can help staff–family cooperation. Suitable ways to communicate, information giving and staff education may need time, funds and administrative support.

Workloads, staffing models and care practice should support positive relationships between staff and families.

Acknowledge family visits. Let families know how important their visits are.

Staff training

Staff need to understand family members’ worries and anxieties and the benefits of ongoing family involvement to people with dementia and staff. Staff training around the family experience can be useful.

A family member who has been a primary carer may find it hard to give up control of the care of their loved one. Most families want to be acknowledged. Ask if they would like to take part in caring for their relative.

If staff see family involvement as secondary or upsetting care, the full benefits and ethical reasons for building staff–family contacts need to be explained and talked about. New organisation-wide policies, practices and supervisory methods need to be set up to help staff.

Family members give ‘a sense of continuity with the past, provide information about the present and assist with decisions about the future’ Janzen 2001.

Connecting with the community

The family is usually a person’s main link to life outside a facility. However, a strong relationship between people with dementia and the wider community is possible.

The facility must be seen as an important part of the community. Older models of institutional care and negative ideas of older people with dementia have often cast dementia facilities in a negative light. Facilities should be inviting, pleasant places for relatives, friends and community members to visit, and valued places in local neighbourhoods.

Community activities should be brought into the facility as part of everyday life, and people with dementia and staff should go out to community activities. The result can be valued community partnerships.

Spend time watching what is going on in the community to get ideas to link community organisations and people with dementia. Watch what local organisations and groups are doing and think about whether they would find working with older people fulfilling. Match what you see with the needs of people with dementia to find common interests and possible partnerships.

To find ways of connecting with the community, contact local businesses, schools, community groups and peak bodies, and advertise in local newspapers. Use community contacts suggested by family members relating to a person’s past life.

Count us in! Irvin House

Count us in! is a Department of Health social inclusion initiative for people with dementia. Irvin House, Cobram, a public sector residential aged care service, has built in experiences to help people with dementia keep up community links.

People attend a local hydrotherapy pool for weekly swimming. Their ability to join in has amazed staff and families and resulted in improved physical ability and health. One person practised and gained greater distances in the pool with each visit. The effects of buoyancy and supported movement in hydrotherapy have carried over into daily life, with people showing a greater range of movement after pool visits.

When staff organised a visit to the local antique fair, a person saw a face they knew in the crowd, starting a conversation for the first time since going to the facility.

Staff have organised other events such as town and bush walks, fishing trips and picnics, and visits to a local vintage car rally, an ANZAC Day service, former workplaces, cafés and bakeries. During outings staff members wear colourful shirts making it easy for people to recognise them and increasing community awareness of the facility.

Other project results include:

  • reduced unmet need, sleep disruption and falls
  • marked rise in cognitive capability in people with early stage dementia
  • shift in community attitude and response towards people with dementia, with retail and hospitality staff communicating more often with people
  • staff development and confidence in holistic individualised care.

Most activities are ongoing, built into models of care at Irvin House.

Count us in! Cooinda Lodge Nursing Home

The Cooinda Lodge Nursing Home, Warragul has an Internet Café–Pen Pal program and community outings.

The internet café helps people keep in touch with families, friends and local students. Residents and local secondary and primary school students have bonded, with students seeing their resident pen pal as part of their extended family. Residents and students enjoy their visits and swap emails.

Students are involved in:

  • performances in the facility of Polyglot Puppets
  • samba sessions, with people with dementia and students playing percussion
  • joint art sessions, with people with dementia and students painting portraits.

People with dementia socialise with others during local community outings and events, resulting in greater acceptance of the facility in the community. In the Music Melodies program, residents visit a local club where guest artists perform and people can dance.

An art therapy student has volunteered a day a week to work with people, organising local volunteers to help people with dementia and staff create a mural, now hanging in the facility.

Count us in! See: www.health.vic.gov.au/agedcare/maintaining/countusin/.

American and Canadian examples of community links include:

  • a chapter of the American Association of Retired Persons using room in a facility for regular monthly meetings that are attended by members living in the facility
  • a facility-sponsored community health fair attended by local community members and vendors offering different services
  • setting up a small chip and putting green at a facility, open to community members, after a staff member held golf sessions with people on the facility’s front lawn.

Opening up to the community

I used to hate visiting my dad, seeing him pace up and down, hitting out at staff when they tried to stop him leaving. All that has changed. We have new management and a new purpose-built home. Dad is much happier and is more a part of our life because we spend more time in his home. Yeah, we see it more like his home than ‘a nursing home’.

Dad and I go outside to the men’s shed and it’s just like old times. He seems more himself and we chat like we used to. He can’t really build much but he loves to hammer nails into wood and take screws out. He doesn’t try to get out anymore. Whenever he starts pacing the staff just point him in the direction of the shed and he seems to settle. I think I might get the Wood Turners Association involved. They have a group of carpenters in U3A who might like to spend time there along with the school kids doing woodwork.

My wife really likes the child care centre. She can see dad on the way to work when she drops our daughter off and then one of us will drop in when we pick her up after work. Dad can go and see Jess during the day if he wants to — she calls him papa. On Fridays we take him to the bistro and he chooses what he wants for dinner. Lots more families seem to visit since Angela’s Café set up in the home. They’re doing good business. I think more businesses will see the value of building partnerships with aged care facilities.

Changes you can make now: examples

Low cost

  • Create a visual display to let visitors know about everyday activities, special events and facility news. Ask families, friends and community organisations to add items of interest.
  • Create a family council to encourage involvement, support quality improvement and improve communication.
  • Commit the facility to a policy of encouraging joint family–staff care planning to improve relationships and draw on family members’ insights into relatives’ needs.
  • Involve families in everyday living through activity kitchens, music and games rooms.
  • Have verbal or written invitations to families and friends for special events.
  • Ask families and carers of people from diverse backgrounds to share information about culturally suitable care, including meals and recipes, days of meaning when traditional foods may be preferred and culturally suitable exercise.
  • Invite families from different cultural and linguistic backgrounds to support specific religious practices or customs to do with death and dying.
  • Invite representatives from local businesses, community organisations, schools, and other groups to build community links with the facility.
  • Become involved in a visiting pets program such as PALS, Lort Smith Animal Hospital.
  • Use lessons from Count us in! to support ongoing links with family and community.
  • Use the Carers Victoria checklist to involve families, carers and friends. Contact Carers Victoria on Freecall 1800 242 636.

Moderate cost

  • Run education and training workshops and have educational materials to help family and friends understand life with dementia.
  • Find and decorate a quiet, private area where the person with dementia, family members and friends can gather.

High cost

  • Create larger scale recreational and community activity areas that invite family involvement and encourage community links, for example a bowling green, a café, an on-site child care facility or children’s play area.
  • Buy communications technology such as video-phones and a video-link so distant families can keep in touch with and see their loved ones.