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Living with dementia: what conversations do you need to have?

Living with dementia: what conversations do you need to have?

The number of people with dementia is set to double by 2050 to over 16.2 million people in Europe, and two million in the UK1 leading to a significant increase in demands on our health and social care services.  It’s therefore never been more important for dementia care to be prioritised as the ageing population continues to grow.

For people just starting out on their dementia journey, or for their loved ones, it can be a worrying time. Here Bernadette Mossman, Healthcare Director at specialist dementia care provider Vida Healthcare; and Nick Rhodes, Head of Wills & Probate at Blacks Solicitors; discuss the conversations you need to know about, and how to approach them sensitively and empathetically.

Lasting Powers of Attorney

It’s essential that people living with dementia have a chosen representative to speak and act on their behalf if/when they no longer have the capacity to make decisions for themselves.

According to Nick Rhodes, “A Lasting Power of Attorney (LPA) is a document which authorises people (‘attorneys’) to make decisions on an individual’s behalf during their lifetime if they lose capacity or they simply decide they no longer wish to be involved in the everyday running of their finances. An attorney is legally bound to act in a person’s best interest, and Lasting Powers of Attorney are governed by the Mental Capacity Act 2005.

“There are two different types of Lasting Powers of Attorney, one for property and financial affairs, and one for health and welfare. You can appoint up to four people on your LPAs and you can have different people for your financial decisions and your health decisions.”

Bernadette Mossman suggests, “Loved ones must work with their relatives while they still have capacity to make informed decisions and implement a plan of action. The plan should allow the appointed attorney to speak and act in the best interest of the person living with dementia based on their known wishes and preferences. This might include issues such as decisions around treatment and care, ‘do not attempt cardiopulmonary resuscitation’ (DNACPR), admission to a selected care home, and complex care decisions.

“A plan should also be implemented regarding finances and financial arrangements. This should include access to the individuals funds to allow payment for care and general day to day living, and enable the representative to access bank accounts, investment, bills, and properties if required.”

For Nick Rhodes it’s important that people are aware that a spouse or next of kin can’t access bank accounts, and pay utilities without an LPA. “If the person living with dementia no longer has the capacity to make decisions and a plan hasn’t been put in place, the case will have to go to the Court of Protection to secure permission to act on behalf of the individual. This can lead to extensive delays with the process taking up to eight months.”

Future wishes

Bernadette Mossman advises that this conversation needs to take place at the earliest opportunity.  “It allows the loved ones of a person living with dementia to understand the preferred care options as their health deteriorates.  This is never an easy conversation to have, however it’s preferable to begin discussing this when the individual still has capacity and is starting out on their dementia journey, rather than towards the end of their life when loved ones will be grieving. Holding this conversation early will also  allow a plan of care to be drawn up and reviewed as the individual’s needs change.”

Approaching difficult conversations

When it comes to holding difficult conversations and how to approach them, it’s important that communication is open and honest. Conversations should be continuous so that the up-to-date wishes of the individual living with dementia are communicated, including future wishes. Keeping families and loved ones informed and involved, alongside professionals such as care home operators and GPs, will ensure the right care is provided at the right time.

Joint meetings and discussions between professionals, the individual, and their loved ones will provide everyone with much needed support and clarity which is essential at what can be an extremely difficult time.

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