What to ask and what to look for
Caring for a loved one can impact on caregivers both physically and emotionally, especially when dementia is involved. Dementia is often a slow and progressive disease and over time caring for someone with dementia can cause burnout and even depression.
Many caregivers of people living with dementia will arrive at the decision to move a loved one into permanent care based on their own personal circumstances. There is no right or wrong time to initiate or begin discussing this decision and is often based around:
- Available support within the family to provide direct care,
- Safety concerns around the setup of the family home,
- Declining function of the person with dementia,
- Increased caregiver stress.
Whilst the move into a nursing home may help to reduce the direct care obligations on caregivers, in many cases it can result in a different kind of stress.
Caregivers however may feel a sense of relief and a reduction in overall stress levels following admission into care however other feelings of guilt, loneliness, anxiety, anger, depression and financial problems may also precipitate as the carer adapts to changes impacting their life (1).
Making the decision to move
When considering the transition into a nursing home for a loved one, it is important to consider their requirements based on the stage of their dementia and any symptoms they may be experiencing. to ensure the facilities you are inspecting will be able to manage their individual needs.
It is recommended that families work out any particular requirements you have (such as location, price, activities etc) as well as what aspects of care are most important to the family before starting to arrange tours.
One of the most difficult things for families and caregivers is the ‘letting go’ or relinquishing of duties into the hands of others.
Your involvement in your loved one’s care much will help make the transition into the nursing home easier. No-one knows your loved one better than you, so help the staff get to know their new residents likes and dislikes, strategies to help relieve any agitation or anxiety and any potential triggers to those events.
Building trust in a facility can be difficult, however, once a routine has been established overtime it should get easier. It is important to understand that no one will replace or take care of your loved one the way you do, there is no such thing as a perfect facility or staff.
Issues may arise from time to time, minor issues are not uncommon in the early days when the staff are getting to know your loved one. In situations where things haven’t gone the way you would like it’s important you speak up and talk through your concerns with the Clinical or Facility Manager sooner rather than later.
What questions to ask during your tour
Aged Care Report Card has developed a general Nursing Home Checklist to take with you when completing facility tours. Before you start phoning around make a list of key factors important to you, your family and what you believe your loved one would want. You can take the list with you on the tour to ensure you ask all the questions you want to know. It will then be your reference once you have visited a number of facilities.
If possible, find a location close to the person that will be doing most of the visiting. This makes it easier to visit more frequently and quickly, for whatever reason.
Key questions to ask or consider during the tour:
- Low noise level
- Clean and odour free
- Adequate lighting
- Easy to navigate with good signage
- Quiet areas where your loved one can sit with visitors
Facilities that are smaller in size around 30 – 60 beds, or larger facilities that have small scale living environments or pockets within are often more suitable for people with dementia. Generally, larger facilities with unstructured open areas, or long featureless corridors can often challenge people with dementia, leading to increased anxiety, agitation and feeling less secure.
Things to look for when entering the room.
- Is it bright and cheerful, how does the room make you feel?
Chances are it will have a similar impact on your loved one.
- Are there windows for natural light?
- Are there shared rooms or single? For some people with dementia a shared room can be beneficial. It will depend on the individual.
- Can you bring in some familiar items or paintings from home? (remember however too much clutter or stimulation may not be good for the person with dementia – this will be a personal perspective).
- Can residents have a their own phone line in their room? If so who pays for this?
Ensure adequate security
- Are there restrictions of visiting hours?
- Are the exterior doors locked?
- Is there a secure area outside for your loved one to go outside independently (if appropriate for your loved ones needs)?
Staff Training and Activities
- Can this facility care for residents even if their behaviours become worse?
- Under what circumstances would this facility consider moving residents if their condition worsened?
- What types of behaviours would cause you to ask my loved one to move? (This will depend what type of facility your loved one is in – SRS versus Ageing-in-place)
- In the event my loved one had to move, is there another facility you would recommend?
- Have the staff caring for residents had specific dementia care training? If so is it internally or externally? (Aged care providers that offer “dementia” specific training usually will have a greater focus on dementia training for staff. There are some providers that have in-house dementia training and others may use an external company to provide training. All facilities regardless of whether or not they are dementia specific ideally should provide some form of dementia training).
- Are you able to manage residents that can become unsettled or agitated?
- If the facility is dementia specific – ask what their ‘dementia care program’ includes? If the person you care for shows signs of agitation in the afternoon/evening when sundowning is often at it’s worse, ask what activities or support they will be able to provide during this time).
- Do staff have capacity to take residents outside during the day?
- Do they have activities for people with dementia on the weekend?
How often should we, as the family, visit?
There really is no right or wrong answer regarding the frequency of visits, this will depend on the individual person with dementia and the families availability to visit.
The transition into aged care can be difficult and the support of family on the first day of admission can help significantly. If you can spend a few hours on the first day making sure they are comforted by their new surroundings and help set up their room to include familiar items from their own home. It will take time for the staff to get to know the routine or your loved one and their preferred way of doing things, by providing prompts to staff where you can they will start to become more familiar also.
The person with dementia may initially appear angry or resentful and may continually ask to go home – as hard as it is try not to feel guilty for this. Remember yours’ and or your family’s decision to move your loved one into a nursing home. In most cases the decision is not made overnight, it’s often a long process of either frequent respite or hospital admissions, many sleepless nights or carer burnout. It is normal to feel these emotions, trust your judgment to know you are making the right decision. Persevere and remember how much love and support you have given them up until now, allowing them the ability to stay at home for as long as they have, as independent as they have been.
Last but not least, only consider facilities in which you get the sense your loved one will be well cared for, where staff are friendly and welcoming. Trust your gut instincts about a facility, you can always ask to visit the facility again and ask many more questions before you make your decision.