I have the right to be as independent as possible and be included in my community
The Charter of Rights for People with Dementia and their Carers in Scotland states… ( >1)
When this right is respected
People with dementia and their carers have the right to live as independently as possible with access to recreational, leisure and cultural life in their community.
People with dementia have the right to help to attain and maintain maximum independence, physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life.
People with dementia and their carers have the right to access opportunities for community education and lifelong learning.
People with dementia will
Feel safe, secure and live as independently as possible.
Preserve the relationships important to them.
Feel involved and included in their community wherever they live.
People with dementia will...
Be supported to remain as independent as possible.
NHS Boards, local authorities and other service providers will ensure that
A range of local supports and services are available to enable people with dementia to remain in their own home or current care environment for as long as practicable. This should include - practical help, support at home, personal care, specialist dementia day care services, short breaks, flexible respite and access to telecare and assistive technology.
There is access to self directed support, including direct payments and other types of assistance, to enable a person with dementia and their carer to direct and determine their own support package.
People with dementia will have access to sight and hearing tests and have the aids they need.
Services provided are committed to promoting independence and providing personalised services that enhance and maintain existing supports available to people with dementia and their carers.
The care provided shows a balance between their duty of care and the right of people with dementia who retain capacity to make decisions for themselves and to take risks in their own lives.
The principles of the Adults With Incapacity (Scotland) Act 2000 are used to inform decision making when taking decisions on behalf of a person with dementia who lacks capacity to make that decision. ( >2)
Risk assessment and management processes include analysis of the potential benefits of an activity.
Adaptations and reasonable adjustments are made to the physical environment in buildings where people with dementia are likely to attend to make the design of any building as dementia friendly as possible. ( >20)
Have the opportunity to be included in community life and meaningful activities as they wish.
All service providers will
Give people with dementia the support they need, wherever they are living, to continue to be involved in their ordinary activities such as; exercise, involvement in music, dance, social events and religious activity and to become involved in new activities and experiences.
Assess the mobility needs of the person with dementia and give assistance as necessary.
Encourage and support the person with dementia to maintain the family and social relationships important to them.
Help minimise social exclusion and develop new relationships by establishing and maintaining strong positive engagement with local community and voluntary groups such as befrienders, volunteers, schools, churches, nurseries.
Support people with dementia who may wish to volunteer in their own local communities ( e.g. at day centres, peer support groups and churches).
Mrs Brown: Being involved
Some of the good practice introduced in an NHS continuing care setting to keep people who have more severe dementia involved and active.
Mrs Brown has severe dementia and physical disabilities following a stroke. She has some movement in one arm and will often lie there waving it in an apparent random fashion. Prior to her stroke she had difficulty in finding the right words to express how she was feeling; described by staff as "hard to reach". She often sits with her eyes open staring blankly or with eyes tight shut.
The occupational therapist ( OT) decided to use a projector on the ceiling or curtain (depending on where her gaze was) projecting a "lava lamp" effect in time with some music known to be liked by her. Mrs Brown will track the movement of the shapes with her eyes, and her random arm movement will slow and sometimes cease entirely. At other times, it is noted that her arm will either follow the direction of the projection or, if the music has a beat, will start to move in time to the music. At times, it appears as though she is conducting the music and can spend 10 minutes at a time absolutely engaged. She will end the session by shutting her eyes or looking away.
Other things used by the OT included, colour changing balls (battery operated). Mrs Brown will reach out and allow objects to be placed in her hand. She then clearly focuses on the object, exploring it and being thoroughly absorbed by it.
Mrs Brown used to work in makeup and the OT will bring a large blusher brush or powder puff in. Mrs Brown will allow these to be placed in her hand and if one moves close to her, she will move her arm very purposefully and pat and stroke the OT's face with the item. This affords a real connection between the staff and Mrs Brown.
Isobel: Losing independence and her community
Isobel lived alone in her own home, a first-floor flat in a large city. She was diagnosed with dementia about two years ago but it had little real impact on her daily life; her routines and contacts with her friends and neighbours continued as normal.
About six months ago she was burgled while she was out at bingo and this had a really devastating effect on her. Following that, she began to leave the flat in the early hours of the morning and was returned to her home by the local police who found her walking along the road dressed in her nightdress and slippers. Some of the neighbours were concerned about her and that she may be targeted by local youths and be burgled again.
A social worker was allocated to visit Isobel and assess the situation. Isobel was offered a range of home supports, including home help and a community alarm, but she refused to consider these; she saw this as interference and she was a fiercely independent woman. A case conference was hastily arranged as Isobel had again gone walking late at night; Isobel refused to attend as she did not see what all the fuss was about.
At the case conference a decision was taken that Isobel should be admitted to a care home for respite care, given the level of risk if she remained at home. The GP, who knew her very well, asked if alternatives could be considered and thought that some telecare systems that alerted a warden if she left late at night might be useful. It was decided though to go ahead with the move as it was thought the risk was so great that she needed to be moved immediately and, in any event, she had already refused offers of assistance.
When Isobel was told about this she was horrified and was adamant that she would not move. The social worker made an application for an interim welfare guardianship order to give her the power to insist that Isobel move to the care home and she moved there two days later. Isobel thought she had no choice but to move when all the "official" paperwork was produced. The care home was located about 10 miles away but was quite remote and meant she would need to take two buses and a walk up a long drive to visit her friends and vice versa. As most of her friends were over 80 years of age this made it unlikely that they could visit regularly.
Unfortunately, Isobel suffered a fall shortly after her admission to the care home and fractured her hip. She took a long time to regain her mobility and by then had lost many of her housekeeping and social skills. Her last social worker had moved on to another post and because of her fall there was no plan put in place to try and get her back to her home, so she remained in the care home on a permanent basis.
In Isobel's case, so much more could have been done to keep her at home. The risk assessment concentrated only on the current risks and not on the benefits to her of remaining in her own home. A decision to move her to a care home was taken at a time of crisis in her life, the recent burglary had affected her greatly and she needed time and support to recover. Isobel also had no support to help her oppose the move; she had no family and no independent advocacy worker.