QUALITY STANDARDS

The Memory Assessment Service, your GP, or a dementia advisor offer you and your carer an appointment to develop a personalised dementia care plan, which is a strength-based document that agrees goals, identifies support needs, develops and implement action plans, and monitors progress. The personalised dementia care plan focusses on ‘What really matters to me’ and those around them affected by dementia.

Your care plan may discuss the following:

• dementia treatment and review of this
• what post diagnosis support you may be interested in and what is on offer locally
• access to psychosocial interventions
• peer support networks
• keeping physically active, smoking cessation, reducing alcohol intake, maintain a healthy weight, keep cholesterol and blood pressure at a healthy level
• advanced care planning
• finance issues
• legal issues including planning to undertake lasting powers of attorney (health and welfare, finance)
• discussion about driving safely and planning ahead in relation to driving assessments
• other conditions that you may develop and where to obtain support in the future
• information on delirium
• contingency planning and preparing for vulnerabilities and risks

You will be asked if the care plan can be shared with other services who provide help and support. You will also be provided with a copy of the care plan and can make amendments if you feel it doesn't reflect the discussion that was held.

Your care plan should be reviewed regularly, at least once a year, but it could every six months or whatever frequency is best for you. You can also request to have your care plan reviewed when your or your carer's needs change.
 
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If you have created a care plan with one service or team you can discuss issues in the care plan with others. For example, your GP is able to digitally access and read a care plan plan drawn up with a dementia advisor. After discussing the issue you GP can then update the care plan and makes it digitally available to the dementia advisor. You should never need to explain or bring your care plan to other services.
 
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All staff that you have contact with, are provided with the relevant training to be able to offer you the assistance and support that you may require.
 
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You are engaged as an equal partner in the planning of care strategies that may need some considered discussion and thought; particularly if your loved one is presenting with complex advancing symptoms of dementia. You are offered a package of support as a carer which recognises your personal experiences and offers a person centred approach.
 
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You will be offered the opportunity to find out more about and sign up to Join Dementia Research by Memory Assessment Service staff or by the service which creates and reviews your care plan. They can help you sign up immediately or show you where to find out more information to decide later.

The focus of Joining Dementia Research is to increase the recruitment of volunteers, increase the numbers on the research register, match them to appropriate studies, and increase participation whilst informing volunteers of research opportunities. Anyone, with or without dementia, can register as a volunteer or sign-up for someone else, providing that you have their consent. Signing up is the first step in becoming involved in supporting vital research studies.
 
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If you drive, you will need to make the DVLA aware of your dementia diagnosis. They will assess whether you can continue driving. (Those diagnosed with Mild Cognitive Impairment do not need to inform the DVLA.)
At some point you may no longer be able to drive. Your dementia advisor will be able to inform you about alternatives to driving.
 
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Being diagnosed with dementia or becoming a carer for somebody living with dementia may come with a financial cost, such as loss of income. There are sources of financial helps available to you, depending on your circumstances. Managing your finances differently may also help with any costs.
You will be provided with information about the financial help available to you and supported to claim that help, if needed. You should also be signposted to independent financial advice to help you manage your finances.
 
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After you receive your diagnosis of dementia you will be contacted by a service which will provide you with dementia navigation. They will be your first point of contact for any information about post-diagnostic support for dementia. You should be provided with post-diagnostic information that is tailored to your needs, such as music therapy, art-based therapy, dementia cafes, peer support and allotment groups, and singing groups available in your local area.

At your first meeting with this service, they will help create or review your personalised dementia care plan. They will also discuss the dementia care pathway and discuss where you are up to on this document and how best to use it to inform what you can access in your community.
 
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Dementia is a progressive illness which can affect every aspect of a person's life. But you can maintain a healthy and positive life with dementia.
You should be supported in understanding how to live healthily with dementia, maintaining a good quality of life, continuing with your social life, relationships with friends and family, and any hobbies and interests which you have. These aspects of your life should not be seen as irrelevant or less important by those who care and support you with your dementia.
 
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People living with dementia are at a higher risk of developing delirium, which causes a short term confused state. Delirium can affect memory, concentration and personality. Delirium will usually improve, once the underlying illness is treated, but sometimes it can last for a while.

You should be informed of your greater risk of developing delirium and provided with information about the condition. The information will help you prevent delirium from developing and understand how to manage and treat the condition in somebody living with dementia.
 
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Hearing loss is associated with poorer cognitive functioning and the risk of developing dementia. If you have hearing loss this should be recognised as important by services which support you with your dementia.
You should have access to hearing tests to diagnose any hearing loss, and appropriate services to provide and maintain hearing aids.
 
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People living with dementia have a higher rate of tooth decay and gum disease. Maintaining good oral health is important for overall wellbeing.
Your dentist should work with you to plan in advance how oral health can be maintained, including carer education to prevent decay, fluoride treatments, and regular screenings.
 
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If you experience a crisis, which could be due to a number of reasons, you know where to go and how to access timely support and if needed further assessment.
 
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All staff working to support you have an understanding of behaviour that challenges (BtC) and know where and how to offer support or refer on as needed. Recognising that behaviours that staff may consider challenging is often a way of you maintaining a sense of control, dignity and wellbeing, and/or to ease discomfort or distress.

BtC can be defined as: ‘An expression of distress by the person living with dementia (or others in the environment) that arises from unmet health or psychosocial need(s). The behaviours often reflect attempts by the person living with dementia to maintain a sense of control, dignity and wellbeing, and/or to ease discomfort or distress.’
 
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Arts and creative therapies are offered to people at early stages. Arts can stimulate sensory and motor activation, encourage social engagement, stimulate learning through creativity in a failure-free environment and help build cognitive reserve.
 
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Arts and creative therapies and maintaining a connection to these, be it things you have always enjoyed and engaged with and/or the offer of new engagement and alternatives are embedded in conversations with you, as part of person centred care planning.
 
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You are provided with information about what to expect when your family member is admitted to an inpatient mental health ward. This information enables you to understand what to expect, how you will be able to contribute and be part of the assessment and care planning; if you are feeling that this would be welcomed. You are provided with support too as a carer by the ward team.
 
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People with dementia should have the same access to community health and care services as others with complex support needs.

People living with dementia may have greater support needs as their condition progresses.
 
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Social prescribing is a way for local agencies to refer people to a link worker. Link workers give people time, focusing on ‘what matters to them’ and taking a holistic approach to people’s health and wellbeing. They connect people to community groups and statutory services for practical and emotional support, link workers also support existing community groups to be accessible and sustainable, and help people to start new groups, working collaboratively with all local partners.
Social prescribing is used where people can live better by improving social and environmental aspects of their lives. For example, social prescriptions might encourage people to live better by being active in their local community by volunteering, befriending or doing activities provided by community organisations.
 

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Some people living with dementia may go missing if they leave their homes or change their routines unexpectedly. They may have become confused about where they live or errands they need to undertake, particularly with details from other periods in their lives.

The Herbert Protocol allows the families of people living with dementia to prepare in case they go missing. A standardised form can be completed listing places where the person with dementia used to live, work, or enjoy spending time. This can help the police quickly check a number of likely locations where the person living with dementia can be found.
 
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All services providing a navigation and supportive role for people affected by dementia work to the GM wide principles of Dementia Care Navigation.
 
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