I have the right to access a range of treatment, care and supports
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 full participation in care needs assessment, planning, deciding and arranging care, support and treatment.
People with dementia have the right to access appropriate levels of care providing protection, rehabilitation and encouragement.
People with dementia have the right to the highest attainable standard of physical and mental health.
People with dementia and their carers will
Feel listened to, participate in decision making and have a say in how support and treatment is provided.
Receive the support and treatment that they need to stay well and lead a fulfilling life on a timely and coordinated basis.
Will not experience inhuman or degrading treatment. ( >3)
People with dementia and their carers will...
Have access to independent advocacy services.
All service providers will ensure that
Wherever the person with dementia is; at home, attending a day service, in hospital or in a care home, they will know about the purpose and availability of local independent advocacy services and be given any necessary support to contact and use advocacy services.
Advocacy services will be publicised in a way that the person with dementia and/or their carer can understand and be given the necessary support to enable them to contact advocacy services.
Local authorities and NHS Boards will ensure
The availability of independent advocacy in their area. ( >4)
Be able to easily obtain information and advice about supports and care services that are available locally in order to make informed choices.
Local authorities and NHS Boards will ensure that
Information on supports and services is advertised locally in a variety of formats and includes who to contact for more information. Information should also be provided about eligibility criteria, service prioritisation, and assessment and care management processes.
People with dementia and their carers are given information about self directed support, such as direct payments, and are given assistance to access this.
Receive a good quality, timely and integrated assessment.
Local authorities and NHS Boards will ensure that
When an assessment for support and care is carried out, it will be outcome focused. This means focusing on what it is the person with dementia and their carer(s) want to achieve. ( >36)
The person with dementia and their carer will have an active and ongoing role in the assessment process to find out the amount and type of care and support needed and what can be achieved in partnership with services. They will be given a choice as to how, and by whom their support is provided.
Assessment will include looking at the supports that are already available and the relationships important to the person with dementia that must be maintained.
Life story and personal preferences will be recorded and taken fully into consideration during the assessment process.
Assessment processes include consideration of the person with dementia's capacity to make their own decisions and referral processes are in place for further assessment if required.
All agencies involved will co-operate with the assessment process to ensure that the person with dementia and their carer know who to contact and that a single care plan is put in place.
The person with dementia and their carer can receive a copy of their assessment and have the opportunity to challenge it if they wish to.
Carers are made aware of their entitlement to an assessment of their needs. ( >5)
Procedures are in place to ensure staff have the time, resources and skills necessary to undertake quality assessments and to engage with the person with dementia and their carer on an ongoing basis.
Experience a person-centred approach to support and care.
Local authorities, NHS Boards will ensure that
Access to a wide range of quality support and care services is available, including practical help, support at home, personal care, day opportunities and day care services, short breaks and flexible respite, care homes, counselling services, peer support and specialist housing.
The person with dementia and their carer are supported to make decisions that put them in control of the care and support they receive.
Regular reviews are held to ensure outcomes are being achieved and changes made to the support provided if, for example, the person's needs have changed or extra support is available at times of transition ( e.g. returning from hospital, moving to a care home, bereavement).
If there is evidence that the person with dementia is at risk of harm, exploitation or abuse there are local procedures in place to protect them and the staff take account of the person's views about risk. ( >6)
Receive treatment that is in line with the law.
NHS Boards will ensure that
Systems are in place to ensure that capacity to consent to treatment is considered and appropriate documentation in place where necessary. ( >2b)
Wherever they are living, people with dementia will have access to the full range of primary and specialist healthcare, including assessment and management of sensory impairment.
Receive treatment that is likely to be of benefit, including a range of non-drug based treatments.
NHS Boards will ensure that
Referral for specialist dementia assessment to a team specialising in the management of dementia is available wherever the person with dementia is living.
Assessment for the use of nationally recognised and approved drug treatments for dementia is carried out using an approved assessment tool and approved treatment prescribed and reviewed where clinically indicated. ( >17 and >19)
High quality pharmaceutical care and safe medicines management systems are available to people with dementia in all settings.
If symptoms develop that cause distress or lead to behaviour that challenges, there will be an integrated assessment to establish the cause and a care plan developed to manage this. ( >17)
When psychoactive medication (including anti-depressants and tranquilisers) and in particular anti-psychotic medication is prescribed for people with dementia the prescribing doctor will need to be satisfied that there will be a clear benefit for the person with dementia and no reasonable alternative. The doctor will set a date to review its continued use and put in place a plan to ensure that carers and staff are aware of any potential side effects and where to report any concerns they have.
A range of non-drug based interventions are available and include evidence based therapies, such as group based or individual cognitive stimulation, individual reality orientation therapy, art therapy, therapeutic activities and physical exercise programmes. ( >19)
If behavioural or psychiatric symptoms are ongoing and distressing, referral is available to a psychologist or suitably qualified therapist for assessment and tailored intervention.
Receive good quality care if admitted to a general hospital, accident and emergency department. or attend an out-patient department.
NHS Boards will ensure that
Systems are in place so staff can easily identify someone with dementia, who may need extra support
Each general hospital has access for advice and/or assessment to a liaison service specialising in the diagnosis and management of dementia.
Systems are in place to request and record key personal information about people with dementia and ensure that this information is shared with staff who are in direct contact with them.
Guidelines on the management of delirium are available to all staff who provide care to acutely unwell people.
Systems are in place to monitor the number of moves people with dementia are subject to when in hospital.
Regular audit of the physical environment using the dementia design checklist and that appropriate action is taken to meet any deficits. ( >20)
Along with local authority partners, discharge planning arrangements will consider a range of care and support options. Robust procedures are in place to review decisions taken to transfer someone with dementia who previously lived at home to a care home. ( >21)
Support and care for Marion
Al cares for his wife Marion who has dementia; they live in a city centre. Marion has been assessed as needing 1 hour and 45 minutes of personal care each day.
Having previously received support from private sector agencies, arranged by the social work department, Al now uses a direct payment to employ a personal assistant for Marion.
Al was unhappy with the inconsistency of carers and the standard of service provided by the first private sector agency he experienced. He asked the social work department to use a different agency, a request which took three months to implement.
'Carers would regularly cut visits short and blatantly cut corners. The agency regularly sent different care workers, which meant spending time showing them where things were and what was required.' Al
Whilst the new agency was good for the first few weeks, they soon resorted to similar bad practices as the first agency. Al made complaints about the service but felt they had no impact, his view being that the care workers knew they had the backing of the system.
Al found out about direct payments by chance at a welfare rights talk given at an Alzheimer Scotland carer support group. Once he applied for a direct payment, things moved fast with the support of his social worker and all other staff members involved in the process.
They initially received a direct payment at the lowest hourly rate; however, Al felt they needed a carer with an awareness of Marion's illness. He asked his social worker for a higher rate, so that he could employ someone who better understood dementia. This request was approved by the social work department once they received a supportive letter from Marion's consultant.
Al initially found it difficult to find an appropriate person to employ; he wanted someone who would be working for them only so they were not "slotting you in" with other clients. He feels the nature of dementia makes flexibility essential, and having someone who is not fully booked for the day means they can provide the extra help they may need at any time. Al's daughter helped with the advertising and selection of a personal assistant, and they found their current carer after a few attempts. Al feels it is important to build a good relationship with the carer so they start to feel like one of the family.
Their personal assistant has accompanied them on a trip to London to visit family. Although Al could only pay the normal daily hours, their carer appreciated the opportunity to explore London. When staying in their daughter's holiday home in Spain, Al used the direct payment to pay a local person to help with Marion's personal care.
*This example has been reproduced with permission of Alzheimer Scotland - let's get personal, personalisation and dementia.
A poor care experience for Mr Walker
Mr Walker was diagnosed with dementia about five years ago; he lives with his wife at home with no formal supports.
He needed to be admitted to a general hospital for some physical investigations and was told he would need to be there for a day from 7am to 7pm.
His wife accompanied him to the ward and stayed with him for the first hour. Before leaving, she told a member of the nursing staff about his illness and how this affected his short term memory.
For the first hour on the ward Mr Walker was quite content reading his newspapers; he remembered quite clearly where he was and why.
During the course of the morning he was separately interviewed by a member of the nursing staff, the ward doctor, the anaesthetist, the pharmacist and the physiotherapist. All of them asked him very similar questions and Mr Walker quickly became tired.
At lunchtime, a tray of food was left near his bed so Mr Walker ate this as he was very hungry and thought this was for him. A member of staff found him eating this and seemed annoyed with him, she told him he was supposed to be fasting before his procedure and now it would have to be delayed until the early evening.
Mr Walker was becoming increasingly disorientated. From his bedside he could see the hustle and bustle of activity in the ward but no one spoke to him. He could not see where the nearest toilet was and could not work out how to use the combined telephone/television/radio unit beside his bed. He was becoming very frustrated and had great difficulty finding his way around the ward.
By the time his wife visited in the evening she found him very upset. He could not remember where he was or why he was there and he was insisting on leaving with her.
His wife spoke to the staff on duty and found out that the nurse she spoke to in the morning had made an entry in Mr Walker's notes that he had dementia but had not told anyone else about this, nor had she highlighted any assistance he might need in his care plan. As Mr Walker looked physically very well and initially came across as articulate and settled, the staff had made an assumption that he did not require any extra explanation or reassurance about what was happening, so had left him alone to wait for his procedure.
Mrs Walker felt she had no option but to take her husband home. Mr Walker was in no longer a fit state to go for a medical procedure then spend the night there.
Unfortunately, it would be at least six weeks before he could return for the procedure and he worried about going back to the hospital.