It may seem overwhelming at first. You may feel shock, you may be worried about the impact it will have on you and those close to you and you might feel scared. But getting a diagnosis of early-stage dementia can help you make changes to live as well as possible and make plans.
A diagnosis may be life-changing, but it is certainly not life-ending. Despite the challenges it brings, many people with dementia live fulfilling lives for many years.
The memory clinic or another health specialist in charge of your care should tell you the type of dementia they think you have. They may suggest drugs to slow the progression of your symptoms. They should also arrange to see you regularly to check how you are getting on.
Understanding changes in behaviour
As the dementia progresses, many people develop behaviours that can be challenging. This includes restlessness and aggression. Aggression is not just about physical acts but can be shown in other ways, including verbal aggression. These behaviours can be distressing, both for the person and the carer. If a person with dementia becomes aggressive, it is important to remember that they are not ‘behaving badly’ and are not to blame. Their behaviour may be a direct result of changes in their brain, or be caused by a general health problem, such as pain from an infection. These behaviours can also reflect problems related to the care the person is receiving, or their general environment or social interactions. In this case, the behaviour is best viewed as an attempt to communicate an unmet need, rather than as a direct symptom of dementia. If a person is being aggressive, they should be assessed by their GP in the first instance to identify any possible underlying causes
Understanding changes in communication
Dementia affects people’s communication in different ways. Some people, particularly early on in their dementia, may have very few difficulties communicating. It may be enough to summarise regularly and provide assistance to keep people on track. Some people may have virtually no language at all. In these situations, the person will need a lot more help to communicate and you may need to use other forms of communication when interacting with them, for example gestures , facial expression and the tone of your voice. If someone is shouting and distressed, try to use a low soothing tone in our voice. If you match their energy you will likely escalate how they are feeling.
The term ‘sundowning’ refers to a state of confusion occurring in the late afternoon and spanning into the night. Sundowning can causes a range of behaviour, confusion, anxiety, aggression or ignoring direction. Sundowning can lead to pacing and wandering. The cause of this behaviour is unknown and may continue for several months often happening in the middle and later stages of dementia.
Maintaining good Health - Eating and Drinking
Poor appetite, cognitive impairment (problems with mental abilities), physical disabilities and sensory impairments (hearing and sight loss) can all cause the person with dementia to have problems eating and drinking.
Although eating and drinking difficulties are fairly common in people with dementia, each person’s difficulties will be unique to them and their situation. Because of this you should take into account the person’s preferences, beliefs, culture and life history. For example, their religious beliefs may mean they do not eat certain foods such as pork or shellfish, or they may be affected by the environment around them. You should tailor solutions to the person’s individual needs and preferences.
As dementia progresses, the person is likely to need more support to meet their needs.
Make the home a safer and more comfortable environment
The design and layout of a person’s home can have a big impact on their daily life. There are lots of ways you can make the person’s home ‘dementia friendly’. This means that it is set up to help them stay independent, physically active and safe.
Assistive technology has potential benefits for people with dementia providing it is introduced early on in the care of an individual with dementia and is tailored to each individual’s needs For example, it can enable people to live independently for longer, reduce stress on people with dementia and carers and can potentially enhance the quality of life for people with dementia and give them greater choices about their care.
For carers, there is evidence to suggest that since the introduction of telecare in to their caring situation, they have benefited from more peace of mind, a better night’s sleep, improved the relationship with the person(s) they cared for,
Some people with dementia may feel stigmatised by assistive technology, it is important that they are consulted as to whether they are happy to use it.
When you can no longer live alone
There may come a time when you need more support and are no longer able to manage at home on your own. It can be hard to know when this point has come. You won’t necessarily have to move into a nursing or care home if you can no longer live alone. There are a range of housing options that you could consider such a sheltered housing, extra care scheme or shared lives scheme. Some of these will give you more independence than others, depending on the amount of support you need.
As a person’s dementia progresses, there may come a time where full-time residential or nursing care is needed. If the person cannot make this decision for themselves, it is often left to the carer or family to make the decision about moving them into a care home. Being prepared for this eventuality early on, and having discussions as early as possible, can help to make the decision slightly easier when the time comes.