At the May 2018 cafe, Rena O’Hara (Assistant Nursing Director of Ryevale Nursing Home) talked to us about some of the changes we might notice as we go through our journey with dementia, when we might need some additional supports, and what kind of supports are available. Some highlights from Rena’s talk are presented below.
Changes we might notice:
- Changes to physical health
- Changes to our ability to remember things
- Sensory changes (e.g. vision, hearing, smell, taste)
- Increased falls and/or balance problems
- Changes to our perception of time (e.g. day/night; the 24-hour clock)
- Changes to our spatial awareness (e.g. reaching out for objects, missing the chair when we go to sit)
- Lower energy levels
- Less ability to work as well as we did previously
- Less ability to manage daily tasks (e.g. shopping, housework, banking)
There are a number of different reasons why some of these things can happen. It is always worth checking if medication has changed recently as different medications can have side effects. It is also important to get a physical check-up as problems with the thyroid can affect our memory, for example. So, your first port of call should be your GP. If the problems are likely to be related to dementia, your second port of call will be your Memory Clinic or a consultant such as an Old Age Psychiatrist or a Geriatrician. If you are under 65 years of age, it is more likely that you will see a neurologist or maybe a psychiatrist first.
Rena then went on to talk about the anxiety that people often experience when they get a diagnosis of dementia and when they notice that some things may be starting to change for them. It is important to remember that people with dementia may have difficulty expressing how they feel. A handout was available that gave some examples of what people might be feeling.
Getting more support
People can reach a point where they need a little more support than family and friends can give and there are a number of options available:
- GP and Public Health Nurse (PHN) – these are the people to go to find out more about help in the community. They can provide information about what is available in your area and how to access this help (e.g. home help, day care)
- Alzheimer Society of Ireland (ASI) – it may be possible to get some social support (e.g. befriending) from the Alzheimer Society; they also have some day care and respite services
- Respite – this can be organised through the PHN or through the ASI. As well as giving the primary caregiver a break, respite often incorporates a general health check-up (including blood tests) for the person with dementia.
- Long-term care – over time changes can become particularly difficult to manage at home. This is especially true if there are other medical problems or if there are frequent problems at night time. Sometimes a different environment can be helpful to the person with dementia. For example, if the person likes to walk a lot, they may find being at home restrictive, particularly if they are unable to go outside without someone with them. The larger space in a long-term residential setting may be helpful to them.
Transition to long-term care
The transition to long-term care can be a difficult time. The first step is knowing where to go to get help. The PHN and/or the Community Mental Health Nurse can help by providing a list of the nursing homes in your area. There are booklets available to help guide you through the decision and to help you choose the right nursing home for you. Copies of these are available at the Cafe or you can click here for more information.
The next step is to look at the Fair Deal Scheme (formally known as the Nursing Home Support Scheme or NHSS for short). The Fair Deal Assessment is a physical (needs of the person with dementia) and financial assessment to (a) determine if nursing home care is required and (b) decide what portion of those costs you will pay versus the costs that will be paid for you are part of the Fair Deal Scheme. The PHN, Community Mental Health Nurse or the Community Social Worker can help with this process. There are also good guides available from the Citizen’s Information (click here) and from the HSE (click here). The HSE quick guide is ok as an introdution but it is a little confusing when you are trying to work out your own circumstances. The full document is actually easier to understand as it includes some worked examples of people in different situations. Click here to access the full booklet.
More information is always available in the Cafe. If we don’t know the answer to your question, we will know someone who does!