A diagnosis of dementia, what now?

A diagnosis of dementia, what now?

Even in the darkest phase be it thick or thin, always someone marches brave here beneath my skin
K.D. Lang

If your partner has just received a diagnosis of dementia, you are probably both feeling scared and uncertain about what lies ahead. If you have children living at home there will be an added concern about how you and your partner’s roles as parents will change. Be kind to yourselves you will need a little time to get used to this. It is usually helpful to talk to family and friends openly and ask for their support. Once you have had some time to get used to the diagnosis it is important to take some control and start to make plans together. There is currently no cure for dementia, but much can be done to help you and your partner live a meaningful life and remain well. These articles are here to help you.

Firstly, speak with your doctor about addressing any support and possible treatment and care needs. Some medications are licensed for certain types of dementia that may help to temporarily slow down the disease and thereby manage the symptoms. These are donepezil, rivastigmine and galantamine. Whether your partner will be offered these may depend on their medical history. Where diagnosed with vascular dementia, speak to your doctor about minimising risk factors for further strokes such as reducing high blood pressure and adopting a healthy diet and exercise. There is much that can be achieved through living healthily with fresh air, gentle exercise and good nutrition.

It is quite likely that you will both be feeling anxious, I would certainly recommend trying to get outdoors together and go on some walks to help your moods and to help you both get into the habit of making healthy decisions. It may also be worth finding out about psychological therapies such as cognitive behavioural therapy (CBT) to help with low mood and anxiety that may occur due to the dementia. Your doctor may be able to recommend a psychotherapist or a counsellor to help you both. Finding the light will also prove invaluable by introducing ways to keep your partner mentally and physically stimulated that may help towards slowing down the progression of their dementia.

It is important to work together to plan for the future in order to avoid difficult situations arising and sometimes even avert a crisis in terms of care, welfare and finances. You will both need to explore your options with regard to putting affairs in order since your partner’s ability to make decisions will be affected over time. Make sure that when discussing such legal and financial matters, that your partner feels safe and is not confronted and that their feelings are listened to. I would recommend sitting together more than once and discuss your partner’s choices and decisions in relation to finances and future care with them. This may not always be easy but if you can make plans together it will help you both in the future. Maybe start off with writing down their wants and not wants. For example, they may have specific religious and/or cultural beliefs that may influence what they eat or how they worship or they may wish to avoid certain medical treatment. It is important that their choices are documented and whilst, of course decisions can change, you have both taken some control in future planning.

I would then advise seeking legal advice to help with will writing, power of attorney, living wills and advance care planning to make sure that your partner’s wishes are respected. If you don’t have a legal advisor, contact your local dementia charity or age concern, they should be able to support you in your decisions and signpost you to the help you need.

If your partner is still working, you will need to consider discussing the diagnosis with their Human Resources/Personnel department and occupational health. Depending on their job and how their dementia is affecting them, employers should be able to offer some flexible working support or plans. They may also help with discussing pensions and possible future options. A diagnosis of dementia does not necessarily mean that they have to give up their job immediately but the roles that they undertake may change.

If you have a young family you are undoubtedly going to be concerned about how the diagnosis will impact on them. Whilst the news is distressing, children and teens may actually be relieved to know that their loved one’s behaviour is caused by a disease and that they are not the cause. It is better to be open and honest with them so they can continue to feel trust towards you and they may very likely learn how to manage their emotions more effectively when you all pull together. Make sure that you explain to them about the diagnosis in a calm way and give some simple examples of how the dementia may affect your partner, such as forgetting names and losing words. Remember it is important to remind them of all that your partner is still able to do, so that you do not all focus too much on their difficulties. Give them plenty of hugs and reassurance and give them the opportunity to ask questions at all times and to express their feelings. Getting them involved in activities will help them stay connected to your partner and help them feel a sense of usefulness.

Author’s Biog

Jane Mullins

Jane Mullins

Jane Mullins is a dementia nurse consultant who has devoted over 25 years to the study and practice of dementia care. Through listening to and supporting people and their families during their diagnosis in the memory clinics of Bath and Cardiff, caring for people living with dementia in hospital and in care homes, she has helped people throughout all of the stages of their condition. When managing a Nursing Home, she has supported their transition from home to residential care using living histories as a guide to planning their life and care throughout their remaining years.

Jane has uncovered certain common features that may help carers and the people they care for find better ways of coping. Her practice experience is backed up by expert knowledge gained from attending conferences, seminars, investigator meetings and studying for Her PhD; A suitcase full of memories: a sensory ethnography of dementia. She explores sensory, creative and intuitive ways of reminiscence that help with communication. She is passionate about spreading the word about how dementia can affect people and offers creative, meaningful ways to communicate and reconnect with the one they love.

Jane Mullins, Freelance Dementia Nurse Consultant, Writer and Researcher