Caring for a person with dementia can be stressful, difficult and overwhelming; particularly as the illness progresses and you watch the person you love slip away.
Currently less than half of the people living with dementia receive a formal diagnosis. If you are noticing changes in a person close to you, then it is important to see the GP. It may be that there are physical reasons why the person is changing and the treatment of those physical symptoms will make an improvement. Having a urine infection or being dehydrated can increase confusion which can be mistaken for signs of dementia.
If physical illness is ruled out or treated and there is no improvement, ask the GP to make a referral to the memory clinic where further tests can be carried out. These may include an assessment of memory and functioning, a brain scan or blood tests. If an early diagnosis is made, it may be that one of the medications now available could be prescribed. These medications can, for some people, help to slow the progress of the illness in the early stages.
An early diagnosis can also be helpful as it can give the person and their family the time to think and plan for the future, find out about the kind of help and support that is available in their local area and start to understand the implications of the diagnosis on the person and their family.
On first getting a diagnosis, emotions will be mixed. For some there is a feeling of relief that at last there is a clear cause for the changes, but this will be mixed with worry for the future and concern for the person who has received the diagnosis.
Take this opportunity to plan ahead with the person whilst they are still able to be involved in those discussions and able to express the things that are important to them, though these will not be easy conversations. By starting these in the early stages, it gives time for everyone involved to think through what is important, means that these decisions do not need to be rushed., and allows the person who has received the diagnosis to think about what is important to them.
Things that you may wish to consider
- Discussing the possibility of putting a Power of Attorney in place. They do not have to be activated immediately. Having had the opportunity to discuss this and agreeing who would be best to take this role is much better done earlier. Power of Attorney covers two arrears, finance and health & welfare; they are both dealt with separately.
- Many people have clear views about their treatment when they become very unwell, so this may also be the time to discuss this and put an Advance Decision document (or Living Will) in place. This is best to be clearly written down, signed and witnessed, so your wishes about treatment are clear. This would remain relevant once the person was no longer able to clearly communicate their wishes. A discussion with the GP would be useful so the decision can be recorded in the GP records. A copy of the Advance Decision document needs to be available to any carers or others involved in providing support.
- What are the wishes of the person regarding longer term care? Would they prefer to stay in their own home for as long as possible or do they feel a care home would be the best option? If staying at home is the preferred option are there financial implications to be considered if there is no eligibility for Social Services funded care? There are various options to consider with Home Care, daily timed visits and 24 hour or live in care.
- Consider starting to put together a life story book with the person so important information about them is not lost and can be used by carers to interact and reminisce as the illness progresses. Write people or place names on the back of photos to help with prompting and reminding as difficulty with memory increases. Include favourite music, hobbies and pastimes. A box with special objects that prompt memories and discussion can also be really useful.
- Find out about support services in the local area, many of which are run by charities or voluntary group. Try to establish a support network if you are caring for a person with dementia.
Care and Support
All forms of dementia are progressive, but every person diagnosed will experience it differently. The symptoms may not follow the same pattern and the progress of the illness will also be different for each person. This can be affected by the type of dementia the person has as well, so there are no hard and fast rules for how it will progress.
For the benefit of the person and their carer, particularly if this is a family member start to make links with groups and organisations that can offer support. See if there is a dementia cafe or drop in centre in your local area or if there are local charities or voluntary groups who run activities or support groups. Investigate day services or home care to allow any full time carer involved to have a regular break. It can feel very isolating both living with and supporting a person with dementia and the support that can come from others who are sharing the same experiences can be really beneficial.
AgeUK, the Alzheimer’s Society and your Social Services department are also people to approach to see what is available in your local area.
The Care Bill which comes into force in 2015, for the first time gives carers as well as the person they are caring for the right to have an assessment to see what help they need. Your local social services will be responsible for carrying out this assessment.
In the early stages of the illness the person may experience periods of frustration and depression as they still have awareness of the deterioration in their memory and functioning. It can also be compounded if their family and carers try to do more for them out of a sense of care and compassion.
If you are caring for a person with dementia it is really important to still see the person they are and always have been rather than seeing them only through the label of their illness. This can be difficult if the person is becoming increasingly dependent and loosing daily living skills. If they insist on putting the tea bag in the kettle to make a cup of tea several times a day, constantly ask repetitive questions or do not sleep well at night for example, this can place a huge burden on the carer and add to the stress and pressure they feel.
Try to allow the person as much independence and autonomy as possible. This can be achieved by maybe giving them a chance to just do the parts of a task that they can still manage whilst offering support with the rest or by changing the way that things are done to allow them to still participate in whatever way they can manage. This will help to maintain their self esteem and confidence which is really important.
Concentration can be affected and the person may become restless. This can particularly affect mealtimes as the person may find it harder to sit down to eat their meals. It is also possible that they will find cutlery harder to use. If you are concerned that the person is not eating enough for whatever reason, try finger foods or leave snacks around like chopped fruit, biscuits or similar.
If communication becomes difficult, use clear simple language and allow the person time to process what you are saying and then form a response.
For the carer a chance to have a break and an opportunity to rest and recover is really important. It is worth making an arrangement to have someone who comes in regularly so the person being cared for is able to get to know them and they can build a relationship. This will also enable to carer to have their break away from the house and not worry if everything is alright in their absence. Start to investigate good quality home care or care home options (depending on the conversations you all had in the beginning) before a crisis point is reached. A good provider will keep your details and always be happy to help when you are ready.
Hints and tips
- If things are getting on top of you ask for help or accept help that is offered, or take a 10 minute time out with a cup of tea away from the person.
- Make the most of the good days or hours to do something enjoyable and positive. Everyone will benefit.
- Allow the person as much autonomy and independence as possible.
- Allow extra time for them to do things
- Allow involvement in everyday tasks to maintain independence.
- Keep conversation clear and simple and ensure the person can see your face
- Try to avoid distractions like TV or background noise when talking to the person
- Allow them time to take in what was said and respond
- Try to keep your body language relaxed and positive.
- Try not to talk about the person in front of them
- If they are insistent about something, do not be drawn into an argument. Try to use distraction to change the conversation.
- Ask for an Occupational Therapy Assessment to see if there are any aids and adaptations that could help with independence in mobility and eating and drinking
- Consider slip on or Velcro fastening shoes to help maintain independence
River Garden Care provides high quality private home care to for dementia sufferers in Bromley and the surrounding areas. If you need further information about anything in this article or home care, please call us on 020 8228 1118.