What to do if you have been diagnosed with dementia

Receiving a dementia diagnosis can be a frightening and confusing time, and one that can often raise a lot of different questions for the person that has been diagnosed. For some, it may have come as a complete shock whilst others describe it as being a confirmation of suspicions they have had in relation to their health for some time. 

It is a good idea to speak to a loved one, family member or trusted friend and to share any worries or concerns you may have about your diagnosis with them. Talking things through can help you face the emotional trials of a diagnosis and also aid with the more practical steps when planning for the future.

+Making a plan

Once a diagnosis has been made by a medical professional, there are a number of matters such as legal, financial and what type of care you may require to be considered. As dementia is a progressive illness, it is important to make a clear plan while you are relatively well. 

One of the first things to think about after a diagnosis is getting assessed. A ‘community care assessment’ should be carried out by your local authority and they have a duty to do this by law. This can be arranged by contacting your local social services department or your GP. The assessment’s purpose is to establish which local authority services you may require and what help and support you are entitled to. 

Some of the other main things to think about include: 

Staying well

As with other chronic conditions, it is important to look after your general health when you have dementia. Eating a healthy and varied diet and taking regular, gentle exercise can benefit both your physical and mental well being. 

Maintaining a regular bedtime routine is also important as dementia can often cause symptoms related to disturbed sleep. Simple tips such as avoiding alcohol or caffeine after a certain time in the evening, trying to avoid daytime napping and ensuring your bedroom is a comfortable and relaxing place to rest can make a huge difference. 

There are also various vaccinations such as the flu and pneumonia vaccination that you can have. This can be discussed with your GP who will advise if this would be beneficial for you. 

Looking after your mental health

Being diagnosed with dementia can be an upsetting time and it is common for people who have recently been diagnosed to experience depression, low mood and/or anxiety.

If you are experiencing any of these symptoms, talk to your GP who can discuss a range of treatments that may help. Talking treatments have proven to be extremely effective in depression in over 65’s, in particular those with dementia and can often greatly improve your situation if you are struggling with feelings of low mood. 

Personalised care plans 

You may want to create a personalised care plan that sets out details of your future care and enables you to opt-out of certain future medical treatments or procedures should your condition worsen in the future. This will give you the ability to take care of your health and future care while you are still well. Your specific care plan should be discussed directly with your GP or medical professional who is treating you.

You may also wish to draw up an advance decision which will allow loved ones, medical professionals and carers to know of your decision to refuse a specific treatment in the future.

Legal plans 

There are a number of things to think about when it comes to legal matters after receiving a dementia diagnosis. Below is an outline of some of the important factors to ensure are in order. 

Making a will 

A will is a legal document that ensures that after you die, your property, money and possessions pass on to the person or people of your choosing. This should be organised via your solicitor and they will be able to take you through the process. After a diagnosis of dementia has been made, the person is still able to make or change their will at future points, providing it is clear they understand what they are doing and have full appreciation of what the outcome of this will be. A solicitor will ensure that this is the case before any legal amendments or adjustments are made. 

Ensuring your legal papers are in order  

It is helpful to have a clear system in place for organising your papers such as banking statements and information, mortgage or housing documents and bills or other important information. 

It might be an idea to ask a trusted family member or loved one to help with this, ensuring that there is a straight-forward system in place that will cut down on stress or confusion moving forward. 

For further information on this and practical help guides, visit www.alzscot.org/information_and_resources/money_and_legal_issues  

Power of attorney 

It is advisable to appoint a trusted family member/s or close friend/s as your power of attorney who you trust to make decisions about you if you are no longer able to. As dementia is a progressive illness, meaning that symptoms get worse over time, there may be a time in your future when you are no longer able to give consent.  

There are three different forms of power of attorney, these are:

  • Lasting power of attorney for matters relating to property and financial affairs
  • Lasting power of attorney for matters concerning a person’s welfare
  • Enduring power of attorney made before 1st October 2007 remains valid and can only be registered if a person’s mental capacity is in question. 

Lasting power of attorney will not be legally recognised until it is registered with the Office of the Public Guardian. For further information on registering a power of attorney, visit www.gov.uk/power-of-attorney/overview 

Benefits you may be entitled to

There may be a number of governmental benefits that you are entitled to. The most common type of benefits people with dementia receive include:

  • Personal Independence Payment
  • Carer’s Allowance 

+What to do if somebody you love has been diagnosed with dementia

Finding out that somebody close to you has been diagnosed with dementia can be a daunting and uncertain time. As the illness progresses, your relationship with them will almost certainly change. This can raise it’s own set of challenges but it is important to know that there is lots of help and support out there. 

You may find that the person with dementia becomes unable to perform certain tasks that they once could and that they have increased difficulty in their day-to-day living. It is therefore important that you set out a plan of action with them for the future and that this is done at the earliest opportunity. You can find more information on this and practical advice here

Behavioural changes

Although each person with dementia will deal with the illness in their own way, it is common that there may be some behavioural challenges present. As a loved one looking in, this can be not only upsetting but also confusing and at times, frustrating. If you are experiencing behavioural changes in a loved one such as them repeating the same thing over and over, repeatedly carrying out the same activity, aggression, shouting, paranoia  or pacing, it is important to remember that this is an attempt by them to communicate how they are feeling and that they are not behaving this way deliberately. 

It is helpful to stay calm in such situations and try to figure out what they may be trying to communicate. Try to put yourself in their shoes and understand how frightening and frustrating it must be for them to be unable to express themselves in a way they once could. 

Distraction, by means of mental or light physical activity may help to focus the person’s energy elsewhere and aid them to express themselves in a different way. A GP will also be able to recommend various behaviour therapies, such as CBT (cognitive behavioural therapy) or other talking therapies that can help the person dealing with dementia make sense of their feelings. 

Support for loved ones and carers 
You may find it helpful to talk to someone about how your loved one’s diagnosis is affecting you and there is a lot of support and help available. 

Local support groups where carers’ of people can come together to chat and support each other are available throughout Scotland and specialist dementia organisations such as Alzheimer Scotland offer a wealth of practical support and advice. 

Dementia helpline

There is also a 24-hour, freephone dementia helpline for people with dementia, carers, relatives, professionals, students and anyone concerned about dementia. The Scottish service offers information and support on: 

  • Rights and entitlements
  • Coping with behaviour changes
  • Community care
  • Long-stay care
  • Understanding the illness
  • Treatments
  • How to get help locally
  • Maintaining independence
  • Financial and legal matters

Dementia Helpline Logo

Further information on this service can be found at www.alzscot.org/assets/0000/0255/helplineleaflet.pdf

Problems associated with dementia

There are many problems commonly associated with dementia, each of which can produce their own individual set of issues. Common problems that people with dementia can encounter include:

  • Sleep problems/ disturbance
  • Personal hygiene
  • Incontinence
  • Nutrition
  • Behavioural challenges
  • Mobility
  • Social exclusion or feelings of isolation 

For those with dementia or their carers, these practical problems can be challenging, however, there is a lot of help available that makes dealing with these issues easier, enabling allowances for these to be incorporated into your daily routine.

Ways to help

Helping someone with dementia to overcome day-to-day challenges can help them not only practically but also mentally as it allows them to feel supported and cared for. As the illness progresses, you may find that they require more support as management of tasks becomes more difficult for them to handle independently.

Involving them in everyday tasks such as grocery shopping, preparation for dinner and other household tasks can help the person to feel included, useful and above all, can

improve their confidence and self-worth. Tasks don’t have to be strenuous and can be as simple as asking them to “taste test” foods for you when cooking or getting them to help you out with small tasks in the garden on a sunny day.

Memory aids can also be useful during early stages of dementia and can allow the person with it to remain more independent for a little longer. Placing aids around the house, such as signs on doors for specific rooms (such as a picture of a toilet on the bathroom door) or a sign labelling the cupboard where they keep their medication can act as useful triggers for their memory.

For further information on everyday care for someone with dementia, visit www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200354 which
gives practical advice on how to help with health, dressing, washing and eating and drinking.