A dementia diagnosis can bring uncertainty. But planning ahead at an early stage allows you to make informed choices, maintaining control over your life for as long as possible and making sure that your personal choices are always respected. This guide outlines the key factors to consider.
If you have been diagnosed with dementia, one of the most important steps in planning for your future is to arrange legal authority for someone you trust to act on your behalf. This includes:
• Lasting Power of Attorney (LPA) or equivalent, covering health/welfare and property/finance
• Creating or updating a will
• Reviewing pensions, savings, insurance, and benefits eligibility.
A financial adviser or solicitor with experience in dementia care can help structure long-term plans.
Find out more about managing finances here.
Discuss your future care preferences including where to live, type of care and views on medical interventions as early as possible. You might also wish to prepare planning documents that will help guide professionals and loved ones later on, such as:
• An Advance Care Plan (ACP): a formal, written record of your wishes, values and preferences for future care, including treatment and end-of-life care.
• A ReSPECT form: short for a Recommended Summary Plan for Emergency Care and Treatment, this is a personalised document recording your preferences for clinical care in an emergency when you are unable to express your wishes yourself.
You might also want to consider writing down your values, routines, spiritual beliefs and things that bring you joy, to further help guide your care later on.
Over time, you may need support with daily activities to help around the home and personal care. Explore services such as home care, respite care or community support such as befriending. The use of technology such as a “lifeline” (a personal alarm system that provides a 24/7 link to a control centre in case of emergency), adaptations in the home or transportation support can help you maintain your independence.
Find out more about housing and accommodation here.
Talking openly with family and friends about your wishes will ensure that your choices are known to those you love and care about. These conversations can be difficult and emotional, but are essential for your clarity and peace of mind. Support groups and counselling can help you and your loved one process these changes.