QUALITY STANDARDS

People living with dementia may develop symptoms that cause them distress, because of e.g., experiencing hallucinations or paranoid delusions. A person may also go on to develop behaviours which challenge those who care for them. There are care interventions and treatments that may reduce this distress as well as ways of managing this behaviour successfully. Seeking an assessment from your GP or dementia advisor as early as possible to identify the causes of the behaviours can help reduce their impact.
 
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You may find it beneficial to attend local community groups to build social contacts with other people living with dementia and their carers’. A variety of different groups are available at a range of times and locations to meet different individual interests and support needs. You will be able to ask questions about how to access support and learn from the experiences of others. The friendship and companionship these groups offer can help you feel less isolated and keep you better informed of services and resources.
 
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A dementia-friendly society is a place where people with dementia are understood, respected and supported.

In a dementia-friendly society people will be aware of and understand dementia, so that people with dementia can continue to live in the way they want to and in the community they choose.
 
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This pathway enables the person with dementia and their family to manage their own health and care, adopting a number of strategies and accessing resources. Enabling you and your family and friends to build on your strengths and what you know is working for you, should be the approach of all doctors, care staff, dementia advisors.
 
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If you are beginning to struggle with everyday tasks around the house it can hinder your ability to live independently. Assistive technology are adaptations to your house which meet your changing needs.
A referral can be made to social services to access the assistive technology available to you. An appointment with an occupational therapist will help to understand what changes and adaptations might help you, and the therapist will create a detailed personal plan for your needs.
 
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Presently, there is no pharmacological cure for dementia, though research is ongoing in many areas.

Music has a valuable role to play in enhancing quality of life for people living with the syndrome, and their carers. It has the power to bring people together in the here and now, providing a way to stay connected with loved ones and carers through shared experiences.

It can enliven, stimulate and enable people to express themselves creatively beyond words. This involvement enables people to be seen for who they are beyond their diagnosis.
 
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If you or a family member has symptoms of dementia it is important to be diagnosed as early as possible. Earlier diagnosis allows for early interventions which enables people with dementia to live independently for longer.
Health and social care professionals should act on reports or observations of symptoms to facilitate early diagnosis. Once diagnosed, people with dementia should be offered interventions and not have to wait until their symptoms worsen.
 
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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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Therapy can help you learn skills and strategies to make the most of your memory in terms of your current problems, or ways to help strengthen your thinking and memory. These approaches make the most of your skills and mental functions through exercises and activities.

These therapies may be based on art or music, or a course of Cognitive Stimulation Therapy. There should be a range of therapies so that you can choose which is most suitable for you.

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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The more physically active people are, we know that this has a positive effect on their general health and mental wellbeing. Having access to leisure and physical activities that you may enjoy and wish to continue with will make a difference.
 
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It is never easy to discuss an uncertain future, but dementia is a progressive condition and it is necessary to plan in advance. You can decide now how you would like to be cared for and supported if you are no longer able to decide in the future. Conversations about the future can be had with a dementia advisor or your GP at any time, and there is no need to make decisions immediately. Special appointments to discuss future planning may be helpful as they allow you to prepare for the discussion and think about what you want.
Examples of things which can be planned in advance include:

• lasting powers of attorney,
• advanced statements,
• general needs or preferences in your Wellbeing Plan.

Once they have been agreed they can be shared with health and social care professionals involved in your care to ensure that everybody understands your wishes.
 
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Living with dementia can impact your ability to live independently. Many things which you were previously able to do for yourself may become difficult. Adaptations can help with some tasks, and support at home can also be beneficial.
However, it is an important principle that people with dementia have the right to choose how and where they live. Nobody should feel as though they are not being supported to remain in their own home when they feel that is right for them.
 
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People living with dementia are more likely than people the same age to have other conditions in addition to dementia. This could mean that they do not recover as quickly as they are less reliant when they become acutely unwell. If a person with dementia is admitted to hospital due to an illness or accident their frailty* should be assessed and considered when delivering care.

*NHS England describes frailty as a loss of resilience that means people don't bounce back quickly after a physical or mental illness, an accident or other stressful event.
 
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You are reassured that when you are needing to go in to the hospital, that personal information about you and key items that matter to you, including your This is Me/Getting to know you are transferred with you; as you may not be able to provide this information yourself. This includes a detail of your current functions, likes, dislikes and if you have any lasting power of attorneys and how matters to you most e.g. family, friends, carers, pets.
 
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You are reassured that when you are not able to provide the detail and personal insights as to what matters to you, your likes, and dislikes, who matters to you and what your wishes are; that this that personal information is written down and available for people who are supporting you.
 
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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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If you need to be admitted to hospital you should be assessed for delirium.
Delirium is a condition which is more common among those people living with dementia. Being assessed for delirium means that you can receive treatment for that condition earlier if you have it. The hospital can also help lower the risk of you developing delirium during your stay in hospital.
 
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People living with dementia are at higher risk of developing delirium. If they are diagnosed with delirium they will be managed and provided with treatment to improve their delirium. Cognitive tests and delirium screening should be repeated to ensure that their condition is improving and symptoms have subsided.

If somebody diagnosed with delirium is not responding to treatment and cognitive impairment persists they should be referred onward for further assessment and treatment.
 
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If you have been diagnosed with dementia and are admitted to hospital, you may need to access special services. These services can ensure that you are supported and treated properly while in hospital and will help with discharge.

Your diagnosis of dementia will be recorded by the hospital when you are admitted and shared with these specialist services, even if you have not been admitted for a reason related to dementia.
 
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If you are admitted to hospital the person who cares for you should be involved in your care throughout your stay; particularly when you may not be able to make decisions yourself.

Medical professionals involved in your healthcare in hospital should be in constant communication with your carer. They should provide them with information, give the opportunity to discuss your needs, and allow them to make decisions. They should work to apply the Mental Capacity Act, when assessing a person who does not have the mental capacity to make decisions about their health and care.
 
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If you are a hospital inpatient you have the right for your carer to stay with you throughout your stay. The presence of your carer may be reassuring, they may help with some of the care, or simply keep you company.
Your carer should not be asked to leave once visiting hours are over, or even during protected mealtimes.
 
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Some people with dementia may be eligible for NHS continuing healthcare and have funding for their social care provided by the NHS. But even if you do not meet the threshold to qualify for NHS continuing healthcare the NHS should still contribute to your health needs, either by commissioning appropriate services or by part-funding support.
 
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You are offered opportunity to maintain your brain health, independence and cognitive skills through meaningful activity whilst living in a care setting.
 
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On rare occasions some people living with dementia may be prescribed antipsychotic medication if they are experiencing certain symptoms such as agitation, aggression and distress. This should only occur where care interventions and other targeted strategies have not been successful in reducing their distress and/or agitation. Such medication can help some people, but it can also have side-effects and should only be prescribed where other methods of managing symptoms have failed.
 
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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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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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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 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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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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As the dementia progresses the person living with dementia may become angry or depressed, reducing their wellbeing and making it difficult for those that support for them. There are therapies available which can help improve the way they feel.

Your GP has more information about available psychological therapies and can help you decide if they are right for you and the person you care for. However, you can self-refer to these psychological services, known as Improving Access to Psychological Therapies (often shortened to IAPT).
 
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