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Real-life Tips to help with a Diagnosis of Dementia

June Hennell gave a talk to Guideposts Dementia Carers Group in April about what to do on diagnosis of dementia, where she highlighted these tips from her own experience.

June’s lovely husband Brian was diagnosed with frontal temporal dementia in 2009.  They showed such love for each other and a positive attitude to the challenges life sent them. June is now a great advocate for people whose lives are affected by dementia and is keen to pass on tips to others who find themselves in a similar situation.

So, you have a dementia diagnosis.  What a lot of facts you will find if you google ‘dementia’!  They may help you in understanding the reality of your diagnosis, but many other things will too.

These tips are not facts or theories about the illness, but real life examples that I know work.

Firstly, please remember that you cannot control dementia, but you can control your reaction to it. You can choose not to be upset or angry, and arguing really is a waste of energy, for you can’t win.

Remember that Anxiety is normal but Panic can be harmful.

Nothing will ever be the same again but there will be a future, albeit a different one. A future of compromises can still be OK.

Take your time

It is OK to feel bereaved and to grieve for the carefree life you once had. Nothing will ever be the same again. Take your time to feel. You’ll feel challenged, confused and cheated before you move on, you will know when that time has come. A sense of relief can sometimes take over.

Try not to worry 

You are now a carer and didn’t ask to be one. Take a deep breath. As often as you need, when things feel over-whelming, retreat to the garden or just anywhere to give yourself a few moments of peace. Most importantly keep things in perspective and don’t apportion blame to yourself or anyone else.

Non negotiables

In the beginning, decide what you can put up with and what you are not prepared to tolerate. It will help you to feel in control when too many conflicting demands occur, and you need to prioritise.

You

Decide how important ‘me time’ is to you.  Plan to make it happen, because you are fundamental to the well-being of your loved one. Don’t delay in joining a Carers’ Group and receive and give mutual support.

Ask for help, and accept it when it is offered

Don’t feel guilty accepting help.  You are not wonder-woman and nether was I.  I never asked so people assumed I was fine, but I was always tired.As well as statutory sources of help, talk to friends, family and neighbours so that they can understand how to help you.

Perhaps my best tip is to Buy a page-a-day diary, to capture

  • What is good that day? It might be just that it was a calm day
  • What didn’t work and what you’ve learned from it. What caused the problem? How to avoid it in future?
  • Who called? What were the effects – did they upset, calm or excite?
  • Medication changes
  • Contacts with Healthcare professionals. It can become hard to remember who said what, when and why, so Write it Down!

Decide what may become difficult in the future and do what you can about it now. 

Consider:

Practical help

Write a list of the skills you don’t have but now wish you did. Be realistic. For example, you may need to learn how to read a meter, adjust timers or check fuses, but engage an electrician for other jobs. Make a list of handy numbers to call.

Daily life

Consider the implications of caring at home, both in the immediate future and long term. In due course, ask for a Carer’s Assessment – it is your right to have one – and ask about adaptions or Assistive Technology.

Every-day Basics

  • Clothing: Easy pull-on leisure clothes (and shoes) simplify things.
  • Look for swaps, for when energy levels or concentration fails
  • Short strolls to replace long walks
    • Magazines to replace long novels (plots too complex)
    • Short films to replace feature movies
    • Hobbies are great when shared, so look for options
    • Outings with friends can still work, so can shared meals or weekends away
    • BBC Breakfast TV repeats news on a rolling programme… great where short term memory is a problem.

Home

  • De-cluttering helps.  Clear out what doesn’t please you
  • Garden: Convert it to a manageable space if you can.

Transport

Consider how getting around might be affected.

  • Your car: is it user friendly, ie easy to get in and out of ? Would the boot take a wheelchair?
  • Don’t rush, but start thinking about whether it is time for the person for whom you care to stop driving. Enlist help to make the decision.
  • Raise the subject with him/herself, talk to your GP and seek advice from the DVLA, family and friends.
  • You need to tell DVLA about the dementia diagnosis and they will annually check with the GP suitability for your loved one to continue driving. The consultant giving the diagnosis will also report it so there is no way out of notifying DVLA.
  • Blue Badges are getting easier to obtain and can be a god-send.

Finances

  • Lasting Powers of Attorney for both health and finance can only be made whilst a person has capacity to decide.
  • It can be worth moving everything into your name because your loved one’s responsibility for checking bank statements may cause problems.
  • Council Tax: 25% reduction is available if one person has dementia.
  • Theatre tickets: many shows come with a free ticket for a carer.

Health, Information and Support

  • This is Me Booklet is a leaflet available from The Alzheimers Society ready to be completed, should your loved one need to be an in-patient.
  • Co-morbidity (Dual conditions): Juggling different treatment plans can be a challenge. NHS Multi-disciplinary teams may be a way forward.

Next Steps

Speak up

In meetings, via local radio and newspapers. Talk about what it is like to be a carer. It is also there to help you when you feel alone. It is not being disloyal. Share the load and the message to help ensure that attention is being focussed on providing help and research on dementia.

Fire fighting

You may spend a lot of time doing this: plugging gaps and getting through one challenge after another. If so, ask an advocate at your Carers’ Group to help you check that you are receiving everything to which you are entitled. Your Care Manager or Dementia Advisor can also assist.

Respite

Don’t leave enquiring about respite care until you are desperate. Try to sample a day so that you can both adjust and assess the benefits. What suits one may not suit another, so try different options until you are content.

You again 

You are doing a massive job which will sap your energy. Look after yourself and stay well. If you can take a walk, your whole feeling of wellbeing may be enhanced and the world seem a calmer place.

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