The most common types of dementia, such as Alzheimer’s disease, are progressive – meaning that the ability to think clearly, reason and remember things gets worse over time. Dementia can also cause changes in personality and mood. A person with early dementia may have short lapses in thinking and memory at first but if the dementia progresses and worsens, the thinking and memory difficulties can eventually become severe enough so that a person with dementia may have significant difficulties caring for him or herself.
Family members and caregivers may face difficult challenges if their loved ones’ dementia becomes more severe. Some symptoms of dementia that may be difficult for patients and caregivers to manage may include inappropriate behaviour, loss of communication skills, disorientation to time and place, delusions, hallucinations, paranoia, and agitation. With this in mind, it is important for people with early dementia (who may become worse with time) to plan for their future as early as possible, while they may still be able to more actively participate in the process.
Staying One Step Ahead
As changes in one’s health arise, having a plan in place can help people with dementia and their caregivers feel more confident that they are carrying out expressed desires and wishes. Even with milder cognitive difficulties, some people with dementia can still make their wishes known, even if not explicitly stated. If wishes cannot be explicitly stated or are unclear because of dementia, families and caregivers may still work together with professionals and others in their community to plan based on their knowledge of the way the person with dementia has lived his/her life and the choices made along the way.
An important first step is to determine the type of dementia that your loved one might have. There are many conditions or diseases that can cause dementia so knowing this may help understand whether or not it will progress over time, and if so, what one might expect over time. Speak with a doctor to get a better sense of the following:
- Is there anything that can be done to manage the specific type of dementia?
- Will the dementia progress? If yes, what can be anticipated?
- What might life with progressive dementia look like tomorrow, in 1 year, 5 years, or 10 years?
With dementia, there are some key plans to make and while some eventualities may be anticipated, others may not. Sitting down with loved ones, a healthcare team, and others who may be available to provide support to discuss the future and each person’s role in caregiving and/or decision making is important. There are legal, financial, social, and care-team decisions that can be made now. Some good goals are to:
- Include your loved one in making decisions, if possible. Understand that people with dementia may be able to participate in their care and make some decisions depending on how advanced their disease is and their understanding of the specific decision
- Get support with planning. For example, you may want to see an lawyer to write out a will, or talk to a social worker about services that might be needed down the road
- Make your loved one’s wishes about the future known to family, friends and caretakers
- Put plans in place in case your loved becomes unable to continue making or participating in decisions for him or herself (e.g. living will)
- Have your loved one choose a healthcare agent (a person who can make certain healthcare decisions if he or she can no longer make those decisions for him/herself) and communicate that decision to the family and healthcare team
Balancing Independence and Safety
Being prepared and staying one step ahead doesn’t mean that freedom is being taken away from your loved one. It is to work toward ensuring that they can be as independent and safe as possible and in keeping with their preferences and beliefs. Getting everyone comfortable with making difficult decisions now will make things go more smoothly in the future. Some questions that can be asked ahead of time include:
- What measures should be used to determine how to safeguard the house? (e.g., removing knobs from the stove, putting bells on the exit door in case the person begins to wander)
- When might it be time to stop driving? Limit cooking? To get help with daily activities?
- When might someone need to come and help for a few mornings per week? During the day? Or at night?
- To avoid isolation, when might social programmes, group support, or other help be good to get started?
- When might everyone know that it may be time to move from in-home help to an assisted living facility or nursing home?
- What advanced care plans have been made?
The goal of planning ahead is to avoid the added stress and difficulty of decision-making without enough time or preparation, or ending up in “crisis mode.” There is plenty of help available for future planning. Local organisations and online resources can help you work through many issues ahead of time.
Rachel Schindler, MD was previously a physician/scientist who lead the strategy for Neuroscience in the Clinical Sciences group at Pfizer’s Global Innovative Pharmaceuticals Medicines Development Group. She is the founder and former Director of the Neurobehavior and Memory Disorders Center at University Hospital at Stony Brook.