Dementia Support Line
'Alarm bell' moments
Online support can help to deal with a sudden realisation that someone's dementia has progressed.
It may be difficult to know how to deal with a sudden realisation that someone's dementia is progressing further, but online support from others who understand can be invaluable.
If you support someone with dementia, a daily routine can be helpful and a source of comfort, particularly as the condition progresses. However, it can also make it harder to cope with a change in a person's needs that becomes apparent in a sudden or surprising way.
Crisis points
'Crisis points' or 'alarm bell' moments can relate to an obvious development, such as when the person with dementia has an accident or rapidly becomes unwell due to a urinary tract infection.
However, change can also take place more gradually. If you're around someone a lot, you may only notice a difference when a specific problem arises, and it could then feel out of the blue.
Carers and family members can be unsure how to tell other people about these changes – including health and social care professionals – especially if they are difficult to describe.
This could result in feelings of frustration or isolation, and a lack of certainty about who to turn to.
Sharing with others
There are forums on Talking Point, our online community, for people who are dealing with all stages of dementia. They can deal with general issues or specific subjects, and there's a members' only area for difficult or sensitive topics.
Talking Point members have discussed how to cope with a change in sleep patterns, or new habits like hiding money or food around the house. Others have shared tips about reassuring someone who has started to experience hallucinations.
It can be a relief for other people to confirm that they have experienced the same thing and to get ideas about what to do next.
Quick response
People can receive responses quickly on Talking Point, since the community is available 24/7 and can be accessed by anyone with an internet connection, whether they are using a computer, tablet or smartphone.
Speaking to others who are in similar situations, Talking Point members can ask questions, suggest things that might be helpful and share their own experiences with people who understand how they are feeling.
Sandra
saysHi mum 96 dementia doubly incontinent difficulty swallowing has to be fed encouraged to swallow keeps sliding off chair been to hospital twice she has been to hospital twice carers never turned up to put her to bed on floor fully dressed soaking wet communication with carers is difficult social services have told family not much they can help mums needs speak to G P CHC I visit mum everyday feel exasperated with care find food left on coffee table mum has to be fed given drink in hand encouraged to drink she just forgets does not like ensure or fortisip I never asked for carers N H S put them in place four times a day after I had problems getting mum standing position said you need help .I will contact her G P my daughters and myself feel exhausted with no communication between social services G Ps matron at hospital where mum spent night was furious rang social services and care home who S agency is in Edgware when we have 150 care agencies in Hertfordshire who would be easier to communicate and nearer to mum.Mum cannot do anything for herself cannot make any decisions or move by herself. Any advice please what to do to meet mums care needs she deserves better sadly deteriorating fast Regards Sandra
Hello Sandra,
Thanks for getting in touch. We're very sorry to hear about your mum's situation - this must be such a worrying time for you and your family.
We'd recommend discussing this with one of our expert dementia advisers, who can provide advice and guidance relating to your mum's care needs. Call our Dementia Connect support line on 0333 150 3456. (More details, including opening hours, are available here: https://www.alzheimers.org.uk/dementia-connect-support-line)
We also have an online community, Talking Point, where carers and other people affected by dementia can share their experiences and receive peer support: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…
We hope this helps, Sandra.
Alzheimer's Society blog team
Sheila Snowball
saysI live in Spain my husband has early stage Alzheimers his health is deteriorating in many different ways is this also part of the bodies reaction to Alzheimer's, there are voluntary aid but the government aid system is not geared to English speaking people although the hospitals have improved that. It is not a problem to me as I speak Spanish but my husband does not,
Hi Sheila,
If you're able to do so, we would recommend calling one of our expert dementia advisers on 0333 150 3456. More details about the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line Or, you could try emailing the team at [email protected].
Alternatively, you could benefit from our online community, Talking Point, where carers and other people affected by dementia can share their experiences and receive peer support. There have been a number of conversations about receiving support in Spain, which you may find of use: https://forum.alzheimers.org.uk/search/169173/?q=spain&o=date
Wishing you all the best,
Alzheimer's Society blog team
Jac
saysHi,
Can anyone recommend a ID bracelet and/or a tracking device.
I am worried about my uncle getting lost and not remembering where he is..
Thanks
Alzheimer's Society Helpline Team
saysWe do have help cards that people carry which can provide a contact number to call if people become aware that someone is lost or confused. These can be sent out from the Helpline 0300 222 1122. Medicalert sell ID bracelets: 01908 951045 www.medicalert.org.uk
Unforgettable has a rage of locating devices, from GPS insoles to simpler, cheaper pocket GPS trackers: www.unforgettable.org
If your uncle carries a smartphone, you can use the Find My Friends app.
However, most of these rely on him remembering his wallet or a certain jacket containing the device, and also someone checking the battery life. The Herbert Protocol is being used in many police stations too, with relatives providing a photo, address and contact phone number so that people can be relocated back home more easily if they come to the attention of the police.