MACS Consultation Response - New Dementia Strategy
Response to the Consultation on ‘A national conversation to inform a new Dementia Strategy’
Question 1: What does dementia mean to you and those around you?
MACS welcomes the opportunity to respond to the discussion paper. Dementia is the loss of cognitive functioning to such an extent that it interferes with a person's daily life and activities. Some people with dementia cannot control their emotions, and their personalities may change. Dementia ranges from when it is just beginning to affect a person's functioning, to the most severe stage, when the person must depend completely on others for basic activities of living.
Dementia can affect all aspects of a person's life, including relationships with family and friends. Someone diagnosed with dementia will affect the relationship with the carer over time. It is important to remember that everyone experiences dementia differently. However, with the right help and support, relationships can still be positive and caring.
Dementia can also have a serious impact on people’s mobility. Systems and designs for travel, whether purchasing a ticket or planning a new street scheme, may be difficult to use. Simple intuitive designs and consultation with people with lived experience are essential to avoid building in access problems for people with dementia.
Question 2: What supports work well for you?
Communication is an important part of any relationship. This is even more important when someone is diagnosed with dementia. It gives recognition of the importance of taking a person-centred and flexible approach to providing support at all stages of the dementia journey through work on diagnosis and for all stages of the illness and in all care settings. Inclusive communication works well. Inclusive communication means sharing information in a way that everybody can understand. For service providers, it means making sure that you recognise that people understand and express themselves in different way. Good communication is an important part of living well after a diagnosis of dementia. It helps people with dementia to keep a sense of self, sustain relationships and maintain their quality of life. Even as communicating becomes more challenging, there are lots of ways to communicate meaningfully together.
Question 3: What challenges need to be addressed?
One of the challenges that need to be addressed are that people will treat people living with dementia differently than they did before. This may be because they don't understand what dementia is or are afraid of the effect on the relationship. For example, trying to explain what the person’s diagnosis means and the ways in which family/friends/carers can help and support the person living with dementia.
Inclusive communications is one form of addressing the challenges and this may be achieved through health or social care professionals via individual care plans. It is also important staff providing transport services such as station staff or bus drivers are aware of inclusive communications and alert to the potential needs of people who have dementia.
Examples to address challenges in terms of communication include the following, specifically if you have noticed that the person with dementia is withdrawing into themselves and starting fewer conversations, it can help to:
- speak clearly and slowly, using short sentences
- give them time to respond
- give them simple choices – avoid creating complicated choices or options
- try not to patronise them or ridicule what they say
- try to make sure your body language is open and relaxed
- use other ways to communicate, such as rephrasing questions because they cannot answer in the way they used to
In addition, the types of communication strategies that may be used with dementia patients includes limiting visual distractions and background noise, such as a TV or radio, that can make it difficult to hear, listening attentively or concentrating. As dementia progresses, ask questions that require a yes or no answer.
Question 4: How would addressing these challenges change lives?
A person centred approach that focuses on meaningful engagement of people with lived experience of dementia. By doing so we can better understand and address the challenges and serve the needs of the people.
Communication is an essential part of who we are as human beings. This process allows us to convey messages, thoughts, or emotions to others around us. We communicate verbally, non-verbally and through written words. In order for communication to occur, the message that is transmitted must be interpreted and understood. When an individual has been diagnosed with a type of dementia, the communication process is affected. This often leads to misunderstandings and frustration from both the individual with dementia and the carer. There are some very important strategies to keep in mind in order to effectively communicate with an individual diagnosed with dementia. Some of these strategies include: allowing ample time for the individual to process the information, recognising the importance of remaining skills and abilities of the individual and minimising the distractions within the environment. Most importantly, it is critical for the carers to realise that communication is possible throughout the entire progression of the dementia.
Studies have shown that 57% of carers lose touch with family or friends as a result of their caring responsibilities, leading to further isolation and emotional distress. Caring for a family member also takes up time, with some caring for their loved ones up to 24 hours a day, seven days a week. They may have to take time out of work and away from their own families in order to care for them, and prioritise this over their hobbies and social lives.
In addition to the actual physical costs of caring for someone, such as higher energy bills, specialist equipment, and care products, this could potentially affect their financial situation, with a loss of earnings or limited career progression. In the current cost of living crisis, it can be a struggle for families to provide all the necessary care, and some may need to make sacrifices elsewhere to make up for this.
Transport service providers should include disability awareness training in their staff training programmes. This is not only important for front line staff but also for managers who design, manage and monitor services.
Question 5: What do we need to build on/learn from what has been done before?
Treatments, activities and support for the carer are just as important in helping people to live well with dementia.
Some of the ways to learn on what has been done before include:
- 1. Cognitive stimulation therapy (CST) involves taking part in group activities and exercises designed to improve: memory, problem-solving skills and language ability. Evidence suggests that CST benefits people with mild to moderate dementia.
- 2. Cognitive rehabilitation: This technique involves working with a trained professional, such as an occupational therapist, and a relative or friend to achieve a personal goal, such as learning to use a mobile phone or other everyday tasks. Cognitive rehabilitation works by getting you to use the parts of your brain that are working to help the parts that are not. In the early stages of dementia, it can help you cope better with the condition
- 3. Reminiscence and life story work; Reminiscence work involves talking about things and events from the person’s past. It usually involves using props such as photos, favourite possessions or music. Life story work involves a compilation of photos, notes and keepsakes from childhood to the present day. It can be either a physical book or a digital version. These approaches are sometimes combined. Evidence shows that they can improve mood and wellbeing.
- 4. Overly complex systems and designs should be avoided. Simple and intuitive systems and designs should be preferred. For example, MACS has expressed concern about some innovative public realm and active travel schemes which introduce coloured road surfaces and complex intersections of road and cycleway crossings which may not be easily understood by someone who has dementia. The principle of ‘inclusive design’ - considering everyone’s needs at the outset - should be adopted.
Question 6: What else would you like to tell us?
Communities shape the exposures and behaviours that influence dementia risk from early life through adulthood. Community also affects the way people interpret the meaning of the experience of having dementia or living with someone with dementia including the expectations they have of social interactions, and the availability of resources. Thus, the community is a key context in which interventions may improve outcomes for people living with dementia and their families and carers. Understanding community context can provide insights into dementia progression as well as challenges that may be addressed.
Planning a national strategy for dementia must include serious consideration of personal mobility. We must ensure that people who are living with dementia (and their families and carers) can get out and about and participate as fully in community life as possible. We must avoid building in barriers which will have an adverse effect on everyday mobility.
Appendix: About the Mobility and Access Committee for Scotland
The Mobility and Access Committee for Scotland (MACS) is a statutory advisory non-departmental public body. Within the founding legislation, Scottish Ministers have defined the overall aim for MACS as follows:
- “MACS will consider such matters relating to the needs of disabled persons in connection with transport as the Committee think appropriate and give advice to Scottish Ministers”.
MACS Strategic Remit is:
- To give Scottish Ministers advice on aspects of policy, legislation and practice affecting the travel needs of disabled people.
- To take account of the broad views and lived experiences of disabled people when giving advice.
- To encourage awareness amongst disabled people in Scotland of developments, which affects their mobility, choices and opportunities.
- To work closely with SG and ensure our work programme complements.
- The work being undertaken by the Inclusive Mobility and Transport Committee (IMTAC), the Disabled Persons Transport Advisory Committee (DPTAC), the Scottish Human Rights Commission, the Equality and Human Rights Commission (EHRC) and other organisations, voluntary and statutory.
- To promote the travel needs of disabled people with designers including transport planners and operators so that these are fully taken into account in the development of vehicles and infrastructure and delivery of services.
- To monitor and evaluate the effectiveness of our work against the above aims and objectives in improving travel opportunities for disabled people in Scotland.